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

Miscellaneous and Personal Stuff I Must Share
21

I am sad to report I don’t know anything about Aspergers. I work with a high-functioning autistic kid at my internship and he’s very sweet but also has that personal space thing (he’s still a toddler, so symptoms aren’t super obvious at this point.)

I did have a language gift from a young age much like your kid. By the time I was 10 I literally had reams of half-written novels in my desk drawers, organized by genre. At 11 I started saving up $350 of my own hard-earned cash for a word-processor… not a computer, just an electronic typewriter. Once I finally could afford it (a year later… I’m talking dedication on my part!) I probably spent 6-8 hours daily on that thing up until I left home. I spent recess indoors reading or writing, and it freaked more than a few teachers out. They worried my withdrawal from social activities was a signal of something wrong. But my Mom would reassure them I just really like writing.

I definitely suggest you encourage this gift. For me it wasn’t only something I loved doing, it was something I needed to understand the world around me. I don’t write fiction as well or as often any more, but I still to this day seem incapable of processing events or understanding my own experiences unless I write them down. My whole world is founded on words.

Despite this kind of artistic introversion, I still managed to make friends, succeed, find my way in the world. I may not be the most exciting person on the planet, but I don’t think people perceive me as socially awkward at all. I say that not to minimize the other issues going on with your daughter but to underscore the fact that all kinds of people can fit into a society successfully.

I just can’t help but think that no matter what this child has to face, she is the luckiest kid in the world to have such loving parents who see and celebrate her for who she is. The value of that can’t be stated enough.

22

HA. I know… I think when I was ten, I could barely write down what I did over the summer. I don’t even know how she knows about some of the things she’s writing about. We don’t necessarily shelter her from things, but we definitely are very discretionary about what she is allowed to watch on TV, movies and music. There could be some aping going on, but I just discovered this notebook of hers yesterday (she has dozens of them, but most are filled with charts of weird things she likes to organize.), and had to make sure she wasn’t just copying down a song or a lyric she heard. Nope, she claims it’s all her. So, of course, I’m encouraging her to write more.

It’s also funny you mention mentoring and assisting of special needs kids. In her elementary school, during 4th grade, she was chosen as one of the mentors for helping a class of lower-functioning autistic children. With her aptitude in reading and writing, the school thought she would be perfect in reading to them and helping them in that regard. My daughter absolutely loved it. So, yeh, now the shoe’s on the other foot, but I don’t want her to look at it that way. I do think she will need a peer to help her and guide her. I hope we can find someone that would be so kind.

auRa, thank you for your story. I see a LOT of similarities between your brother and my daughter. It does manifest a little differently in boys than girls, but the differences are superficial. I think it’s obvious the root is the same.

I wish you and your brother, and the rest of your family the best! Tell him not to eat any red legos!* :wink:

*I don’t know about your bro, but humor seems to be helping with everything right now. Me and my wife are keeping everything very lighthearted when we discuss what’s going on with her. For instance, her full name is Alexandra. We call her Lexi. Now that she’s been diagnosed with Hyperlexia, we told her her new name is HyperLexi. She loves it.

23

Wow. Those lyrics are amazing. I want to hear the songs…

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Is she self-aware that her behavior is socially inappropriate? Does she know that she’s “different” than her peers?

Perhaps her diagnosis will finally give a name to something that she’s known for quite a while. Just having a name for it and realizing that there’s nothing “wrong” with her may help her succeed.

Her poetry is beautiful. I don’t understand how such a young child could understand, let alone express the complex emotions she writes about. While I appreciate getting a sample of her skill, I would gently caution you about publishing her work on the internet. At some point she may want to publish her work (think Mattie Stepanik) and may find that it’s been stolen by others.

25

Aww, thanks Olives. Coming from you, that really means a lot. I’m not surprised in the slightest at how precocious you were (shit… are!), and really respect you. If I could choose a role model for my daughter, it would certainly be you (or someone very much like you, although, that’s a one in 7 billion shot).

I also spent most of my childhood indoors as well, just drawing or drawing, or maybe doing some drawing for a change. But, while I was naturally introverted which was totally fine, I eventually learned to shed my shell and expand my boarders in a healthy, coming-of-age way. Lexi is naturally extroverted… but is starting to build a shell, because it’s safer in there; no one teases her in there. My #1 priority is to keep that extrovert alive. It’s who she is, and I’d hate to see it squelched.

Anyway, really… thanks for the support, kind words, advice and stories, everyone. It goes a long way if not only to confirm I’m handling any of this the right way, but maybe learn about something I hadn’t been aware of, or who knows, maybe encourage someone who’s going through the same. For me, while my daughter is the same person she’s always been, the diagnosis is new, but we now have much greater insight on how to mitigate any obstacles or misunderstandings in life or with other people. Not only that, but it helps me to understand her, when I’m feeling frustrated or confused. And that’s a big deal for any parent.

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Sunspace: They’re not really songs, nor poetry. Not sure what to call them expect lyrics. She’s not at all musical (in the sense she has any innate musical talent.) She just likes writing the words, I guess.
Ruby: Agreed. I’m not gonna post much else from her, if anything at all. It was just a one-time deal to better help illustrate who she is. She’s not very self-aware of her condition, even though it’s been explained. She knows people treat her different to certain degrees, and we’ve gone over almost every detail, but she just doesn’t ‘grok’ what it is about her behavior that might elicit certain responses in certain situations. That’s where a lot of training will need to come in. And a lot of rote repetition. I can’t tell you how many times I’ve told her to not get so close to people’s faces (including my own). Only time will tell.

27

I’ve worked with a few older students with Asperger’s and once they found their social niche they seemed to be very happy. I have one student now who has been having trouble adjusting after a long-distance move. The totally new environment have been very rough for him. Today he seemed to be communicating well with his group members in his class and I overheard him tell them, “I’m autistic. It is not the same thing as RETARDED. It means I don’t always handle social situations well.” :smiley:

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I know nothing of her conditions, but just wanted to chime in and say that her lyrics are incredible. What a talent! Good luck to all of you.

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Cmyk, I have to second the people who’ve noted your love and care for your daughter. Thank you so much! And thanks also for sharing her beautiful poetry. I would love to hear it sung.

I noticed that one person said that her own writing as a kid helped her to perceive her world. That’s a very wise comment, and I hope you can use it if you need to “explain” your daughter to her teachers.

I have kind of diagnosed myself with Asberger’s. One thing I’ve had to do as I make my way through life (I’m 60) is to have “rules” for things that most people seem to be able to do naturally. I have a general rule for myself that “when in doubt, shut up and listen.” Life is a lot more harmonious for me with that rule. I also try to put a little humor in my outlook whenever I can, making fun of myself (silently). You might be able to use humor when you work with your daughter on inappropriate behavior, like the example you used of her wanting to play OB/GYN with her friends.

You’re already doing the most important thing – your daughter knows you love her.

30

One of my best friends has Asperger’s. He’s one of the smartest people I’ve ever met, has dual degrees in math and computer science and is working on his PhD in math.

But, he has a hard time in social situations. He’s aware that he has a hard time interpreting social cues and tends to worry and worry about them, and completely over think many social situations, making himself even more anxious. It took me some time to get used to how he responds to things, but in the end he’s a great, funny person and a very supportive friend whose been there through some of my worst times.

His parents made him feel bad about his differences. I wish they had embraced them and taught him better coping strategies, as it seems you are for your daughter. He’s intelligent enough to be aware that he doesn’t fit in, but tends to look at social situations like a math problem, asking me for formulas for him to use to talk to people.

31

i just wanted to state that thinking the ceiling fan could fall on you and chop you into bits (while off) is not an irrational fear. i have no doubt at all that this could happen. don’t get me started on the blender or garbage disposal.

i look forward to your daughter’s novels. i’m sure she could out sell the kid who wrote eragon.

32

In retrospect, a lot of the people I spent time with in high school were in the Asperger’s range. I really, really liked and respected them and didn’t care that they had trouble with some social interactions.

You might like Not Even Wrong and A Different Kind of Boy, both of which are fathers’ initially worried but ultimately loving and hopeful accounts of sons with autism spectrum disorders.

33

The kid’s lyrics or whatever are a little precocious for a ten year old, but pretty standard for say a literate fourteen year old with a “special diary”.

However, the quoted line above is excellent - shows some real insight - needs a bit of work though. I’d take out “top” and just make it the singular “folder”. :slight_smile:

34

I have a theory about Asberger’s.
First, it is something that exists. That I don’t doubt one bit.

I think we all have it to some extent. I think it is a part of the brain that handles the routine stuff and ‘hobby’ (whatever the interest is) very well and it matures faster than the other parts ( social/whatever) . Just like some are athletically good earlier on or very social. Everyone developes at a different rate.

I think that supremely talent athletes have what I call sports asberger’s. It’s all sports all the time and while they are not socially awkward, having know one NHL player and how all he knew was hockey and everything else was not exactly his best subject, is the basis for my wide brush that I paint with. ( We also have a friend who is a very gifted athlete and he could play sports every day full on if it paid the bills. Every other subject in his life he has totally farked over due to lack of interest.) When exposed to other areas outside the realm of their interest, they ( the brain) starts adjusting and expanding.

I know it doesn’t make alot of sense because I am still trying to parse it out in my head.

35

Another parent of an ADHD/Aspergers kid. He turns 15 next week. We also just found out he’s missing a chunk of DNA (on only one chromosome) at 1q21.1 . It’s a relatively rare deletion, but has been found in a few other Aspergers children. There’s a strong indications that there are genetic (100+ genes in many combinations) and brain structure features (look up minicolumns) associated with autistic spectrum disorders. I’ve got a lot of information gathered over the years.

Vlad/Igor

36

Me too, and it’s come extremely handy in life. I’m also (if I may say so myself) a helluva good technical writer; I’ve been commended repeatedly because reading my manuals actually works, and works beautifully.

What I’m trying to say is that only because it has a medical name it’s not necessarly a Bad Thing. Many people, sadly including many doctors and teachers, have the deeply-rooted belief that being in the tail-end of any bell curve is the road to disgrace, damnation and drugs (and maybe even dancing!).

37

I was out tonight with a friend (May I recommend the movie Zombieland?), so sorry I wasn’t available for my own thread!

Anyway, it’s late but I just wanted to chime back in and say thanks again for the thoughts, words, opinions and encouragement.

I harbor my own thoughts and skepticism about “Asperger’s”, “Hyperlexia”, and other more vague, difficult to quantify diagnosis’. I’ve always figured the brain can be very unique, due to it’s complexity, and we don’t really have much of a theory of how the mind works anyway. But we do have data, and commonality to compare to.

We can debate about what’s “normal,” or what’s actually going on in someone’s brain, but in the end, it doesn’t really matter. What matters is making sure if someone is exhibiting a problem that is interfering with their ability to make the most of their life, in this construct we call ‘society’, then need to be able to recognize it, formalize it, in order to give that person the tools (a tool? some tools?) to cope.

If giving her these labels gets her the help and support she needs right now, then so be it. It’s quite a bureaucratic world out there. Bureaucracy needs paper, and paper needs labels and words.

But I can see underneath all these words. The labels are a shorthand for talking about a pattern of behavior she seems to share, in part, or in whole, with others. She’s a whole, unique and wonderful little girl, but if society has built a round hole, then the part of her mind to squeeze through it is a square peg.* One way or another she’s going to make it through the other side, I’m just trying to grease the friction in any constructive way I can, and right now, we’re feeling the heat, so its time to get some help.

Also, I have the perspective to be able to compare my daughter to my seven year old son. Such a profound difference!

*But it’s really deeper than that. There’s a certain common ground we recognize in others. It allows us to connect in meaningful ways. But, what if someone can’t recognize that common ground? Then their communication and behavior might take on a synthetic, abnormal or even inappropriate quality. Who’s got the time or patience for someone like that?

38

You know, it is useful to think of a diagnosis less as a label and more as if it were a ticket. A train ticket does not get me from my house to the Heinecken Music Hall’s front door. I have to go with bike and bus to the station, then I can get on the train, and thereafter I have to go with tram to the music hall for the big event. However, I can be fairly sure that I will not end up in Munich.

In a similar way, diagnoses often are just the way to get to where you need to go, and sometimes you have to travel a bit on your own to get to the station. The important thing is to make sure the train you get a ticket for is going in the right direction, not to worry abotu the fact that it does not in all ways suit your individual needs. These systems are set up for the many, not the one, and so there are many routes to the most travelled paths and not so many to the more unusual.

It is very easy to get caught up in the question of which station has the best facilities or what color the bench cusions are on the train. But the real question is where that train is going and how fast it’s going to get there.

39

Wow. I teach writing, used to be an editor, and have been published many times, and let me tell you–these are amazing.

I probably don’t have to tell you to keep encouraging her to write. She has some very serious talent.

It’s amazing that such a young girl has such insight into human nature. The first two “lyrics” above are particularly impressive. Even if she does have Asperger’s, she seems to understand the human condition more than most adult humans do.

40

I showed my daughter only the comments about her lyrics, and it has touched her and warmed her heart and has given her visible encouragement. I allowed her to respond to you with a short message. [she insisted on purple, and no… she’s not The Grapist.] :wink:

Lexi says, “Whoa! Thanks for the comments! I’ve never heard any say anything that nice to me before about my writing. I’m sure everyone could write better lyrics than me since you are all adults, but I’m just glad that I am am able to share with you and feel your appreciation. It means so much to me. Thank you all!”

And I thank you all for this as well. She’s got huge smiles right now.