Friday, November 8, 2013

Autism and Asperger's: Celebrating my Daughter's Diagnosis

Helping us celebrate the diagnosis: the
Congratulations! You're an Asperkid!
box from the supremely amazing resource Asperkids.
I should have written this post about a year ago, probably. I wrote that our daughter had finally been diagnosed with Asperger Syndrome, and that we were thrilled, relieved, and moving forward. I didn't write about the process very much, other than to say that it had taken damn near forever.

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.

Duh.

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.
An integral part of helping us celebrate was a gift that came from my good friend Jennifer O'Toole, who writes the books and the blog of Asperkids. Jennifer generously sent my daughter a Congratulations! You're an Asperkid! box. Jennifer, a beautiful, brilliant mom who has Asperger, stands as a shining example to my daughter: Asperger Syndrome can be an asset. It is a thing of awesomeness, a thing to be celebrated. Being different is a good thing; this world needs people who think in all kinds of ways.

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.

16 comments:

  1. For anyone who would like to learn more about "Spotting the Pink on the Spectrum," please read this (now internationally-celebrated) article...and then PASS IT ON.
    http://asperkids.com/seeing-the-pink-on-the-spectrum/

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  2. Thanks for sharing the picture of the nuts and bolts bracelet. I'm definitely going to have to order one for my son. He doesn't have an Asperger's diagnosis, but does seem to have some anxiety that he exhibits by chewing on his shirts. I've been looking for something to redirect him to, but that wouldn't look 'babyish". I think I've found it.

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  3. Meredith @ badsandy.com
    I don't have an asperkid (though dare I say you do a great job of making it seem like something we should want. how nice for your kid!), but I loved reading this post. I loved that the diagnosis was a relief, for yourself and your child and that you've met it with gracefulness rather than disappointment.
    xo
    meredith

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  4. This comment has been removed by a blog administrator.

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  5. I am sure you are way more informed then me but I read a book resently called The reason I jump. It is written by a boy with autism and how he sees the world. Aspergers is some thing I worry about with my 5 yr old

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    Replies
    1. Cindy -- I haven't read that yet but I've heard really good things about it!

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  6. Thanks for posting this. I wish it was www.trustwebsitehostingreviews.com able to be translated, but for some reason Google toolbar isn't working. I copy pasted it into another application and read the post.

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  7. It is truly wonderful that you celebrate your children for who they are. And I agree entirely that the earlier you know, the earlier you can parent accordingly. I thought my own son was the most defiant, disobedient, awful two year-old to ever walk the earth--then I found out when he was three that he had such a severe language processing deficit that he understood virtually nothing of what we'd been asking him to do. I still feel profoundly guilty about that five years later, although five years of the intensive speech therapy we hadn't known he needed until then has worked wonders for him. At least I followed the gut reaction that said 'something is wrong here' and had him tested at three despite the fact that the pediatrician wasn't worried!

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  8. What a great read. You and your children are awesome! I cannot even put into words how good this blog made me feel. I am genuinely happy for your family!

    I have also sent you an e-mail, if you could please respond by the end of the day that would be great!

    Thank you kindly,

    Elle.

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  9. As an infant my daughter never looked at my eyes or my face. At her 12mo check up the ped suggested autism but then the senior ped at the clinic dismissed it. As a toddler she only looked at my mouth. She was finally diagnosed at age 3 1/2, after 3 1/2 years of nonstop meltdowns and thinking I was doing something wrong. Now after 3 years of early intervention and therapy she is very high functioning and will look fleetingly at eyes. She has superior academic skills, low/zero pragmatic communication test scores, and debilitating social problems. She did not receive an Asperger's diagnosis because of her significant language delay. The Aspie club kind of annoys me because it's like an elitist branding of autism and there are many just as high functioning and gifted autistic people who can't be part of the "club." PDD-NOS doesn't look as cool on a tshirt.

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  10. Two things. One, fourth grade is exactly when the other kids started noticing I was different, for very similar reasons! I had no interest in music, clothes, makeup, boys (except as playmates) etc. I wanted to play pretend games, and they grew up without me!
    The other... "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." I wish you were MY mom! Granted, my parents did not know that I had ADHD or Aspergers when I was a kid (they were told it was just a behavioral problem I would grow out of and that I just needed more consequences) but they didn't try to find out either, and even as an adult they still seem to avoid the topic as much as possible, expecting me to just learn to deal with life on their terms. Your daughter is so lucky to have you as parents.

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  11. i am here to give testimony of how i got back my husband, we got married for more than 9 years and have gotten two kids. thing were going well with us and we are always happy. until one day my husband started to behave in a way i could not understand, i was very confused by the way he treat me and the kids. later that month he did not come home again and he called me that he want a divorce, i asked him what have i done wrong to deserve this from him, all he was saying is that he want a divorce that he hate me and do not want to see me again in his life, i was mad and also frustrated do not know what to do,i was sick for more than 2 weeks because of the divorce. i love him so much he was everything to me without him my life is incomplete. i told my sister and she told me to contact a spell caster, i never believe in all this spell casting of a thing. i just want to try if something will come out of it. i contacted traditional spell hospital for the return of my husband to me, they told me that my husband have been taken by another woman, that she cast a spell on him that is why he hate me and also want us to divorce. then they told me that they have to cast a spell on him that will make him return to me and the kids, they casted the spell and after 1 week my husband called me and he told me that i should forgive him, he started to apologize on phone and said that he still live me that he did not know what happen to him that he left me. it was the spell that he traditional spell hospital casted on him that make him comeback to me today,me and my family are now happy again today. thank you traditional spell hospital for what you have done for me i would have been nothing today if not for your great spell. i want you my friends who are passing through all this kind of love problem of getting back their husband, wife , or ex boyfriend and girlfriend to contact traditionalspellhospital@gmail.com. and you will see that your problem will be solved without any delay.

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  12. I love your post. I am currently struggling to find someone who will agree that my five year old daughter has aspergers. Not because I want my child to have a label--but because she clearly has every single characteristic and until a professional can agree--educators and others only look to small pieces of the puzzle (like her behavior) and want to declare that is the only problem. I can't tell you how many educators have told me she is "oppositional" or that she couldn't possibly have aspergers because of her rich imagination. I had a hunch at age 3 that something wasn't right and after she was identified as having sensory processing disorder, I began to inquire if she might have aspergers because that alone does not explain her delayed motor issues, social and emotional delays, extreme anxiety (that led to multiple uncontrollable melt downs a day) coupled with her high IQ and advanced vocabulary (she began talking at 4 months and at five rivals most very intelligent high school children. Or her intense interest in certain topics--when she was 2 it was birds, followed by dinosaurs, followed by sea animals, followed by obscure land animals (naked mole rats anyone?), followed by many other types of animals all in categories (for example, black and white animals), followed by anything macabre (werewolves, mummies, vampires, demons), and now it's ancient egypt (there is a pyramid in our living room and on the sly, she cut up one of my best sheets to make a robe for herself so she can pretend to be Cleopatra). The meltdowns in public are so difficult, but since I began to learn about coping strategies that are most effective for Aspies, my parenting has much improved. I shutter to think of all the times I've yelled at her to act proper, fearful I was raising a spoiled, overindulged child. Now that I know more about Aspergers, and how girls present very differently than boys (for example they may excessively live in their imaginary worlds like my daughter) everything points to Aspergers--if it walks like a duck and quacks like a duck, it's probably a duck. However, no professionals seem to want to give her "the label" and now that the criteria has changed, she doesn't exactly meet the criteria for autism because she is so smart and has developed some coping mechanisms that allow her to squeak by. But as a result of that, her school is not providing her the social supports she needs to reduce her social and performance anxiety--and this is coming out as unwanted behavior. Her school uses a behavior procedure where children are told "they chose to not follow rules" before they receive a consequence (such as time out) but given her social limitations, these actions are overly punitive and insensitive in my opinion. As a result, she hates school (and she is only in kindergarten.) I feel like no one is listening to me when I explain she very often can not control herself--and needs coaching and redirection in place of punishment. I've been doing this at home and it works beautifully, but she needs that same support in all her environments. I've talked to several moms of daughters who have similar issues, some whose daughters are high functioning like mine and they struggled for years before they could be diagnosed with aspergers--(the average seems to be around 10 or 12 year old). It is so sad that girls have to struggle so much before they can get an adequate diagnoses and because of that miss out on getting early intervention that could be so helpful. I'll do my best to be sure my daughter gets the help she needs now--as I don't want to have to wait years for it to be finally diagnosed, but hopefully more aspie women and mothers of aspie girls will speak up to change this for girls in the future.

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  13. My Name is johnson Wilson..I never
    believed in Love Spells or Magics until I
    met this special spell caster when i went
    to Africa to Execute some business..He is
    really powerful..My wife and I were divorce with
    no reason for almost 3 years and i tried
    all i could to have her back because i really
    love her so much but all my effort did
    not work out.. we met at our early age at
    the college and we both have feelings for
    each other and we got married happily
    for 5 years with no kid and she woke up
    one morning and said it is over between us and she is going to get a divorce..i thought it was a joke and
    when she came back from work she
    tender to me a divorce letter and she
    packed all her loads from my house..i
    ran mad and i tried all i could to have
    her back but all did not work out..i was
    lonely for almost 3 years…So when i told
    the spell caster what happened he said
    he will help me and he asked for her full
    name and her picture..i gave him
    that..At first i was skeptical but i gave it
    a try because i have tried so many spell
    casters and there was no solution…so when
    he finished with the readings,he got back
    to me that she’s with a man and that
    man is the reason why she left me…The
    spell caster said he will help me with a
    spell that will surely bring her back.but i
    never believe all this…he told me i will
    see a positive result within 3 days..3
    days later,she called me herself and
    came to me apologizing and she told me
    she will come back to me..at first I didn't believe it,it was like a dream because i never
    believe this will work out after trying
    many spell casters and there was no
    solution..The spell caster is so powerful
    and after that he helped me with a
    pregnancy spell and my wife got
    pregnant a month later..we are now
    happy been together again and with
    lovely kid..This spell caster has really
    changed my life and i will forever be
    thankful to him..he has helped many
    friends too with similar problem and
    they are happy and thankful to him..This
    man is indeed the most powerful spell
    caster i have ever experienced in life..Am
    Posting this to the Forum in case there is
    anyone who has similar problem and still
    looking for a way out..you can reach him
    here: alexzanderhightemple@gmail.com......
    CONTACT THIS POWERFUL SPELL CASTER
    TODAY VIA EMAI.alexzanderhightemple@gmail...

    ReplyDelete

  14. i am hear to give testimony of how i got back my husband, we got married for more than 9 years and have gotten two kids. thing were going well with us and we are always happy. until one day my husband started to behave in a way i could not understand, i was very confused by the way he treat me and the kids. later that month he did not come home again and he called me that he want a divorce, i asked him what have i done wrong to deserve this from him, all he was saying is that he want a divorce that he hate me and do not want to see me again in his life, i was mad and also frustrated do not know what to do,i was sick for more than 2 weeks because of the divorce. i love him so much he was everything to me without him my life is incomplete. i told my sister and she told me to contact a spell caster, i never believe in all this spell casting of a thing. i just want to try if something will come out of it. i contacted traditional spell hospital for the return of my husband to me, they told me that my husband have been taken by another woman, that she cast a spell on him that is why he hate me and also want us to divorce. then they told me that they have to cast a spell on him that will make him return to me and the kids, they casted the spell and after 1 week my husband called me and he told me that i should forgive him, he started to apologize on phone and said that he still live me that he did not know what happen to him that he left me. it was the spell that he traditional spell hospital casted on him that make him comeback to me today,me and my family are now happy again today. thank you traditional spell hospital for what you have done for me i would have been nothing today if not for your great spell. i want you my friends who are passing through all this kind of love problem of getting back their husband, wife , or ex boyfriend and girlfriend to contact traditionalspellhospital@gmail.com. and you will see that your problem will be solved without any delay.

    ReplyDelete
  15. Hello friends, an awesome and amazing testimony about a Great spell caster i really love to share. My name is Phil Scott from the United States. Getting my wife back is what i least expected and could never imagine. I and my wife have been married for five years and we have been living happily but all of a sudden she changed completely and turned away from me and i never knew what was going on, i tried to ask her but she refused to tell me what the problem is, and as time went on she sought for a divorce. I was so worried and confused, and i did all my possible best to get her back but it wasn't easy, i thought all hope was lost, and during my search for a way out, a friend of mine who had similar problem told me about a great spell caster called Great Eziza who helped him get back his wife also. I never believe in spell casting in my entire life or a magic because i never thought it will work but i tried to give this man a chance and to my greatest surprise, He cast a spell on me but today we are back together into a lovely home with three beautiful kids. We are happy together again and i am using this opportunity to tell anyone passing similar situation to contact him on ezizatempleofsolution@gmail. com and you will be the next to tell a new testimony.

    ReplyDelete

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