Welp, My Daughter's been Diagnosed with Asperger's and Hyperlexia

Miscellaneous and Personal Stuff I Must Share
1

She’s eleven years old. She’s the sweetest thing in the world, and she has always been a bit different. Never enough to really interfere with her life on the whole, but that was because she was so young. Adults just thought it was cute, or that she was especially precocious. She was instant messaging me from home (while I was at work), when she was three years old. Her reading was off the charts. Everyone was blown away.

But, as a parent, you know when something’s a little off.

And, that’s when her rituals started. And she had night terrors almost every night, at the same time. She couldn’t make friends easy as she started getting older, and then the bullying began. She started to keep a daily journal when she was about five, and organizes her stuffed animals according to an ever-shifting calendar she keeps within that journal. It’s practically indecipherable to me and her mom. But, ostensibly, it makes perfect sense to her.

Her Psychologist showed us her scores. And intellectually she’s pretty normal. Smack-dab in the middle of the bell curve. Nothing deficient. And that’s where this hyperlexia fits in. Her reading/writing/language was almost off the charts. Of course, we weren’t surprised, but when you have actual data like that staring you in the face, it’s quite a splash of cold water. For the most part, hyperlexia is not necessarily a bad thing. It’s not savant level amazing, but we’ve been told it’s sort of like giftedness. However, it throws her off balance. And for some reason, it’s related to her social awkwardness. Must be part of the gift-basket that is autism.

There’s a whole slew of other things, a pinch of classic Asperger’s, and dash of OCD, a sprinkle of impulsiveness. You can call her a “high-functioning autistic” or whatever label, but still, it all adds up in this unique, bright, loving, joyful and terribly naive little girl. She’s going to have a rough road ahead of her, and I’m scared for her in so many ways. But at the same time, I’m proud of her, and I think she’s going to have a great life, despite whatever negative consequences a social disability, and cognitive "hyper"ability may bring her.

Thanks for listening,
-kev

2

After reading this and a bit of the wiki, it sounds like she’s landed in a great mix, and will just be an awesome kid!

FWIW, everyone I have known who was diagnosed with Asperger’s was just like all the rest of us geeks- some of us understood why we didn’t fit in, and some of us didn’t.

The hyperlexia is interesting. I am wondering if I had some of that mix myself.

I could have used a dash of OCD, as you would understand if you saw my room!

What you are describing is, without the diagnosis, just an awesome kid- reminds me of a couple of my daughter’s favorite friends.

I don’t think that layering a diagnosis on there matters much, unless it helps you to love her more.

3

{{cmyk}}

My son (15) has Asperger’s and my daughter (12) has ADHD, anxiety issues, and a dash of ODD. Let me know if there’s anything we can do to help. PM me if you’d like. Even just to vent.

I know it can be tough when you first get a diagnosis, but you are smart to focus on the positive about your daughter. IMNSHO you are doing the right thing by getting help. That is how things get better. I’ve got to get back to work, but again - hugs!

4

While it’s good to think you have a handle on stuff I’m not convinced “Asperger’s” is a real diagnosis of anything, and I think 20 years from now the current trend to slap the the “Asperger’s” tag on any kid outside the mean, and not moving fast enough to escape it will be seen as abusive junk science.

5

Thanks peeps!

Yeh, I know how over diagnosed Asperger’s can seem, but believe me when I say, it’s not something like shyness, geekiness or any other awkward social behavior. A lot of that is perfectly normal, despite its unpleasantness at times, and the badge of honor many geeks wear it as (even when self-diagnosed :rolleyes: ). This… this is another level entirely. Hard to describe, but if you met her, you’d know within the first two minutes, she’s looking at the world with a completely different pair of glasses. It’s caused a lot of grief for her, and us over the years. It’s only because she’s getting older, that the issues are becoming far more pronounced. She’s switched to Jr. High this year, and she has the social adeptness of a 6 or 7 year old. Can’t read sarcasm very well, and is the definition of gullible. She learns best through the written word, and doesn’t take verbal direction well at all. To the point where you don’t think she can even hear what you’re telling her.

Also, she has major irrational fears (e.g. we had to take the ceiling fan down in her room, because she was afraid it was gonna fall and chop her up in her sleep, despite it not even being on). And is very sensitive to loud noises. My wife surprised her this year with Jonas Brother tickets, her favorite band, and went along with a couple friends of hers. We didn’t even think how the sound would effect her, but we should’ve known. As soon as she walked inside the Palace, she started having an anxiety melt down. When the opening act started playing… her friends we jumping up and down in excitement while my wife had to take my daughter out of the stadium and into the bathroom to try and get her to stop freaking out, crying and having a complete breakdown.

She has no sense of personal space, so she will barge right into people’s “zones”, when seeing them for the first time that day, and hug them, hang on them, or get into other girl’s faces. That was okay when she was 5, but how do you think that flies in 6th grade? Not so good. She might go on about very inappropriate topics, or want to play innapropriate games with other kids (She became a little obsessed with all things concerning pregnancy and labor at a very young age, she knows a lot of the lingo from watching episodes of A Baby’s Story on TLC, and would want to play ‘OB/GYN’ with her friends. To her, it’s completely innocent, but try and explain that to her friend’s parents). There’s myriad other specific times and examples I can go on about. Some, I’m sure I’ve even forgotten. Some that pain me to think about. That’s how entrenched it is.

So, that’s where the therapy and training will have to come in. We have her counselor and school on board. Most of her teachers too… except for one. We might have to switch up her schedule, but that would require changing her routine, which she is not too fond of, to put it mildly.

But damn, you should read some of the lyrics and poems she writes. I just read her journal yesterday. I’m blown away. I’ll ask her if I can share some of it with you.

And thanks, Typo Knig. I’ll definitely keep that in mind. For now, it does feel good just to write it all down here, and share with everyone.

6

That’s just it. It’s all very nebulous right now. The mind is such a complex thing, it’s hard to pin it down to any one label. Many professionals think it’s a form of autism, but ok, whatever. The point is, it’s not something she can grow out of; to say she’s just socially behind the mean, would be quite uncritical and unconsidered. There’s without a doubt in my mind, something very profoundly wired in her brain that is not at all typical.

7

I have no answers but she sounds like a wonderful little girl with a great gift.

Hugs to you and her.

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cmyk the love and care with which you write about your daughter is almost audible. She is a very lucky little girl to have such wonderful and understanding parents. The challenges sound great, but the rewards of her special gifts sound even greater.

I’m offering a prayer for you family as you accept this new challenge. I look forward to reading what she has written, if she permits it! Take care.

9

Aspie speaking here. (And maybe a hyperlexic, too. I didn’t know there was a name for it).
I used to have night terrors myself- I was afraid to go to sleep every night. Taking Zoloft was a life-saver for me; you might want to speak to a psychiatrist. The Zoloft also helped with my OCD.

I’ve always had fun and felt at home hanging out with the geeks, the oddballs, and the weirdos. (I use these terms with the greatest affection. Being a weirdo is is a lot more interesting than being “normal”!) I’d say having a group of equally “special” friends will be a great help socially. I remember me and my high school friends would go around planning outrageous pranks, hanging jokes on the bulletin board, doing interesting projects, and exploring the Marilyn Manson Memorial Mikva (don’t ask).

Don’t sweat the future. Remember, geeks will rule the world, and most of those geeks are Aspies. :slight_smile:

There’s a very cute book called All Cats Have Aspergers. The pictures are priceless!

10

“Hyperlexia”? Is that Modern Shrinkish for “bookworm”?

11

First thing I would do is get a second diagnosis from someone unaffilated with your current doctor. I’m not saying he’s wrong, but there is always a “doubt” however small in the back of one’s head, even if you don’t have it now.

Once you get two same diagnosis then find a support group with the same situation.

The reason I say this is simple, right now you don’t seem to have trouble. And you may never have coping issues, which <knock wood> you’ll never have. But if you DO find yourself having coping difficultites, it’s better to have resources and the location of them, long before you need them, then try to look for them when you’re upset.

Good luck to you, and remember as Roseanne Roseannadanna said, “Remember it’s always something.” No kid’s perfect and they all have problems, that’s why God makes them so cute when they sleep, it stops you form killing them :slight_smile:

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@LavenderBlue: Thank you.

@Ellen: I feel like we’re already old friends. Well, we are actually, we’ve just never met in the flesh. :wink: Thanks for your prayers and good vibes!

@Malleus: Geeks WILL inherit the earth! I’ve been considered weird, odd and a misfit all my life, and always took that as a compliment, so I know what you mean. Nice to hear from another Aspie… glad you’ve got a grip on your circumstances. My daughter has been prescribed Prozac just recently (to help with her anxiety and OCD), and some low-dose Clonazepam to help with some intense nightly anxiety she has about bedtime. Too early to tell if it’s doing much. Thanks for the book recommendation, looks awesome… and if anything, she LOVES to read (and God knows she loves animals)!

@Nava: No, much more profound than that. The Wikipedia article sounds like a description of my daughter. I’m not kidding when I say she could read the word “Nebuchadnezzar” when she was 2, with no prior exposure. And that’s just one example.

@Markxxx: Thanks for the advise. I’ve definitely considered it. It’s hard though, because everything is so expensive. We have health insurance, but like many policies, it doesn’t do jack shit. And mental health seems largely ignored and under-covered. $2000 deductible, and after that, only up to 12 visits per year. :rolleyes: did someone say healthcare reform?

She is seeing a highly recommended psychiatrist and psychologist (we’ve done our homework), and now really, it’s just gonna be diligence on our part to keep her normalized in school and with her friends/family. We don’t particularly like the idea of medicating our child, but if it works, why not? If adjusting her chemistry will offer her some relief, then I’m all for it, so long as she only takes as little as she needs for it to be effective. Now, we have to find a nice place for training, and group therapy. I believe she’ll make some great new friends in such an environment.

13

I just watched this program last night.

http://www.bbc.co.uk/sn/tvradio/programmes/horizon/temple.shtml
You may find it interesting. I think you watch it on youtube.

She sounds like a wonderful little girl. (well, not the night terrors part)

14

Okay, my daughter said she’d be thrilled to share. She calls them lyrics and wrote these when she was 10. Of course, I’m a tad biased… Enjoy! (My comments in brackets ).

Kissless

Big blue sequin dress,

Highheeled blue shoes, plump red lips, for the night.

But when I get there hours go by and no sign of your luscious green eyes.

I’m kissless tonight.

I drive home, my eyes are wet but my lips are dry,

Kissless with a frown.

I never thought Ryan would let me down.

(Chorus)
Kissless.

Love Combat [This one is definitely over my head]

Ladies, put your breakup shields into place

Older ladies, put your lipstick on your face.

Men, put your secret crush in your top secret folders

Older men, put your wedding rings in your ring holder

It’s time for Love Combat.

Put the eyeliner on, buy the tux for the Big Day.

Pick out the highheels, before I do this I have one thing to say…

Highway to Heaven

As I look down the road of my life

vast empty and wild,

my heart is wild and goes bump, bump
I get into the car of dreams, and drive down the angel-made pavement,

to my heart and soul.
When the time comes, I will get into my car of dreams

and in the back seat,

My heart buckled on the left, My soul buckled on the right,

Then we drive on the Highway to Heaven.

DeLorean 2.0 [She adores Back to the Future :wink: ]

Vroom goes the engine

Gold-metal coating

License to the year 2035,

It’s the next generation,

of DMC’s creation,

The DeLorean 2.0
Chrome wheel with a picture of what makes time-travel possible

When I say Flux, you say Capacitor…

FLUX!

CAPACITOR!

[ :smiley: ]

Crying

Sitting on a boulder,

A hand on my shoulder,

Saying it’s over.

I didn’t know this would cause so much pain,

Just glad it didn’t rain.

'cause a single drop

would cause my heart to stop
Oh, I am crying

My heart is drying

I am crying

Is another man is pining?

15

This must be stressful, but it sounds like your family is doing well with the news and this situation, cymk. I’m sure that will be a help to your daughter. Being a bookworm and a super-reader isn’t so bad, but I hope she can pick up whatever social skills she needs.

16

I’m not even a Back to the Future fan and I love this.

17

My 12-year-old youngest little brother is a clinically-diagnosed Asperger syndrome kid. Much like your daughter, he seems to be unable to detect sarcasm in others, even though he himself uses it quite extensively in his speech. I suspect this is because he takes so much of his speech patterns and vocabulary from what he reads, and he’s currently borrowing quite a lot of books from his older brothers who are into snarky comedy. His language comprehension is very literal; you have to remember not to use too many figures of speech when talking to him because he takes everything literally.

He also has difficulty reading social cues from other people and will frequently say or do something inappropriate because he just does. Not. Understand that it’s not considered polite to go up to your 55-year-old aunt and say “wow, you’re REALLY wrinkly, you look like Mom’s mother instead of her sister” even if that’s what you think it looks like.

You said your daughter has the social adeptness of maybe a 6-or-7-year-old; I think that’s about the level my brother is on. Compared to his classmates, he’s quite immature in terms of interests and the way he reacts to things. He also gets fixations. Right now, his fixation is this one particular set of Lego toys. He wants nothing else for his birthday presents, Christmas presents, or any other occasion, just these Bionicles. He will talk about them at great length to the exclusion of other topics. This sort of thing has happened with other things before, both in the positive and negative. At one point, he had a negative fixation to any red foods. He would eat green, yellow and orange peppers, but not red. No tomatoes, no strawberries, no red juices. Now he’s mellowed to the point where he’ll eat ketchup, but still no other red foodstuffs.

A also visits a psychologist regularly for the Asperger’s as well as a sort of surveillance of his self-esteem issues - he was born with a cleft lip and palate and has gone through a lot of medical treatments. His teachers in school know that he’s an Aspie kid so they can make special accommodations for him (for example, giving him more time to complete creative writing assignments since he has great difficulty producing written material even though he has quite a vibrant imagination). The most important thing the family can do, in my opinion, is to make the kid understand that there’s nothing wrong with him per se, but most people in society don’t work like he does, and it’s important to learn and conform to certain social norms and ways of doing things, even though they might not seem like the most natural way. Social skills can be learned to a degree, and they will make life much much much much easier. It’s perfectly possible to have Asperger’s and have a beautiful life. It just means more work. For my family, it’s an ongoing education of “A, remember what we talked about not saying everything we think out loud?” and “A, remember that not everyone wants to talk about Bionicles all the time” and “A, it’s not considered polite to just walk off in the middle of a conversation because you saw something interesting over in the other corner of the room”.

The self-diagnosis of Asperger’s as a kind of handy explanation for “doesn’t feel like making the effort of social interaction” is intensely irritating for me, since watching my brother’s development it’s so clear that it goes SO FAR BEYOND geekiness or awkward social behavior it’s not only not in the same ball park, it’s not even the same sport.

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HA. I know it. That kid comes up with some crazy stuff.

19

TEN?!?! Ten years old, and she wrote these!

That is freaking unbelievable. I wish I could ever write that well!

A suggestion- sometimes, teachers will be able to identify older students who combine intelligence, character, and sociability, and can enlist them to help mentor or assist ‘special needs’ kids, expecially in helping them socialize. I was occasionally utilzed to do this when I was in elementary school. Especially as she enters Jr. High in a year or two, she’s going to need someone to keep her from the sharks.

20

No! You cannot demand that we don’t ask!!!

Please explain!

Yes, I know what a mikvah is. :slight_smile: