"New" to the Asperger world

[scrapbookbuzz]

Hello, all!

 

Through observation, absorbing information, and connecting the dots, I've finally come to the conclusion that my dd has Aspergers Syndrome. Based on what I've read so far, I refuse to call it a 'disorder' since 'dis-' implies something wrong. I prefer to think of it as a neurological different order. :D

 

I really started reading up on it this past Thursday and when I showed the information to my husband, he agreed that it definitely describes why our dd acts the way she does so much of the time.

 

I've mentioned it to just a couple of people, including our neighbor who's a licensed therapist, and they've seemed surprised to hear it. She has not been formerly dx'd (diagnosed) but we're pretty certain it applies.

 

So, my question to you is, what was the most beneficial thing to you when you first began this journey? (I already know about her need for 'alone time' and I make sure I give that to her, almost daily. And I'm aware of what presents too much stimuli for her.)

 

Thanks for your insight!

[Guest]

That is a really, really tough question. But I decided after thinking about it for quite a while that rather than any therapy or book, what I think was most beneficial for both my daughter and myself was that I took her seriously -- every overblown anxiety (including not knowing where her hands were when they were behind her back; she absolutely freaked out about this for a number of years), her emotional sensitivity, her clinginess to me, her passions and interests, everything: she was such a logical and verbal child that it never occurred to me that she was putting on or exaggerating, but describing what she was experiencing the best way she could. And it was up to me to validate her experience and not let anyone tell her it wasn't true, even if no one else saw things quite like she did. I have to tell you I don't know how I was given the grace to do this, either, because a few times I almost laughed at something she said in all seriousness, and I think that would have devastated her.

[chiguirre]

So, my question to you is, what was the most beneficial thing to you when you first began this journey?

 

IMHO, the most important first step is to have her professionally evaluated and formally dxed. There are other, similarly presenting conditions that have other treatments and it's important to know exactly what you're dealing with. If your dd does get a formal dx, you'll be able to access therapy and support groups for both of you. You can ask your pediatrician for a referral to a developmental pediatrician, child psychiatrist or pediatric neurologist to get the ball rolling because the wait for an initial appointment can be several months to a year depending on your area.

 

:grouphug:

[Mergath]

IMHO, the most important first step is to have her professionally evaluated and formally dxed. There are other, similarly presenting conditions that have other treatments and it's important to know exactly what you're dealing with. If your dd does get a formal dx, you'll be able to access therapy and support groups for both of you. You can ask your pediatrician for a referral to a developmental pediatrician, child psychiatrist or pediatric neurologist to get the ball rolling because the wait for an initial appointment can be several months to a year depending on your area.

 

:grouphug:

:iagree:

[asta]

(here come the tomatoes)

 

I have a slightly different opinion.

 

Unless you plan on putting your child in public school, I wouldn't bother getting her a "formal diagnosis". As in, having a professional (neuropsychologist, usually) write "Aspergers" down on paper and put it in an "official" file.

 

Would I seek out a professional? Absolutely. Would I get her tested? Of course - that is the best way to discover what her true strengths and weaknesses are, and the best way to approach them will be. (When I say "true", I don't mean those that make her a person, I mean the ones that society views as necessary for academic and social success. Many of which I personally find to be a bunch of hooey, but I digress...)

 

But the reality is, with RARE exceptions, it isn't like health insurance is going to cover any of that therapy anyway - the majority of it, you're either going to have to pay for out of pocket, or figure out how to do yourself.

 

There are millions of people like myself who grew up without any particular special services who managed to make it to adulthood and function in society. There are some who didn't. Personally, I think whether or not they did had more to do with how much effort their parents put in to making sure their kid had opportunities than anything else.

 

My kid, like me, is an Aspie. I don't have it on paper. I don't want his on paper. My doc agrees. She sees it as limiting for him. I have fixed his speech impediment and insured that his handwriting is exceptional (thank you iron-willed Belgian school teachers). When it starts to get sloppy, we go back to basic exercises. His gross motor skills are a bit goofy, so we make sure he is consistently in team sport. Eye contact is impossible with people he doesn't know well, so I taught him the trick of looking at noses and the "spot" between the eyes. He chose an extremely loud musical instrument that requires ear plugs. He conveniently forgets to take them out.

 

By nature, Aspies crave stimulation, but not necessarily from humans. Spinning, squeezing, finger tapping, counting, heavy blankets, tight clothing (but, good lord, NOT tags or itchy stuff), or loose clothing that "slinks" across the skin - all are normal. The "one friend and only one friend and only one friend at a time" is pretty much the norm. Obsessions are normal.

 

On the other hand...

 

There are a LOT of things out there that aren't Aspergers.

 

There are pervasive developmental disorders that manifest solely in over reaction. There are obsessive compulsive disorders that manifest in specific obsessions (only ever talking about a particular book or movie) or having to count or touch things to calm down. There are temporal lobe disorders that cause a dissociation wherein a person literally does not know one of their limbs exist if they cannot see it.

 

I have a standard for myself: the more I know, the more I must admit that I do not know. I have a great deal of medical knowledge, yet I did not go to medical school. My anatomy knowledge sucks. No matter how knowledgeable I may become about a subject, I always, always, leave the diagnosing to the people who do it for a living.

 

 

asta

[Misty]

Welcome to the club! :D

 

I have 3 girls with Asperger's.. they are all completely different from each other..

 

I have one (my 6yr old) who would not make it to adulthood without a professional diagnosis and various therapies..

 

Then there is my oldest who is so high-functioning that she doesn't even need the diagnosis. She has horrible handwriting, motor tics, and she is the most rigid, obsessive person on the planet (okay, maybe just in our house, LOL). She also has OCD and attention issues.. But she interacts with people fairly well and gets along okay without anyone noticing anything is different about her. Honestly, her OCD is the biggest issue... I hate OCD!!!

 

Anyway, some kids require the diagnosis and need a lot of intervention.. some kids do fine without the diagnosis. Most would benefit from at least a social skills class and maybe some OT.. Our insurance has paid for numerous therapies and doctors for my daughters.. Having the diagnosis on paper has really helped us get a lot of services.

[scrapbookbuzz]

Thank you all for your responses. I've known for a LONG time (mostly in the BACK of my brain) that something was 'different' about her. And, honestly, despite the 'lack' of a dx (diagnosis), I'm REALLY GLAD to have something that explains her behavior! She often makes 'rude' statements, but now I know that's not how they're intended. She's often frustrated me to no end (not on purpose, evidently) with her behavior. Now that I know the "why" behind the behavior, I can be calmer about it.

 

I have already found some humor in this. For months I've been praying that the Lord would help me be more organized/orderly and asking Him why I'm not when He is! Well, just within the past couple of days of talking with my beautifully, offbeat daughter, I've discovered that she likes set routines and through reading discovered that Aspies really do need order in their lives. So, by virtue of her unofficial dx, I'm basically being forced to be a more orderly person! :^)

 

As for the other dx's mentioned previously by other posters, I've been researching various LD's, etc, for a few years now. I'm 99.8% sure it's Aspergers. She also struggles with dysgraphia, so I have her use Scrabble tiles for spelling lesson and for handwriting we've gone "back to the basics" with Writing Road to Reading. And, yes, I explained to her the "why" of doing that. Thankfully, she is not OCD. I'm not sure I could handle that! However, she does have 91 Littlest Pet Shops and does like to collect things.

[AngieW in Texas]

My oldest is possibly Asperger's (have been told that she probably is by two professionals who interacted with her in casual settings, never had an appointment). My middle dd is definitely Asperger's and has clearly been on the spectrum from infancy. She doesn't have a formal diagnosis, but she has seen a neuropsych for other reasons and he said that the way she interacted with him was definitely indicative of Asperger's and that along with the history I provided, he would feel very comfortable calling her Aspie.

 

The main thing with my middle dd is keeping her stress/anxiety level low. She needs lots of down-time and alone-time. She doesn't do well at all with being rushed. She does best when she can swing for at least 1 hour/day. She is very aware of when she has said something that causes people to look at her like she has 3 heads, but she can never figure out why saying something that is true would do that. She has a pretty flat affect except when she's talking at you about something she is passionate about (current major interest is philosophy of mind). She mostly talks at people rather than to them. Her facial expressions are often "off" from what you'd expect.

 

My oldest, OTOH, couldn't care less what's going on around her. She rarely feels stressed and does best in novel situations, crowds, and chaos. ADD is her prime driver, so anything that keeps her ADD under control makes things easier for her. She needs the exact opposite of what my other dd needs. She has a leap&swoosh thing she does for stress relief that drives her sisters insane (been doing it all her life). It's this kind of galloping sideways leap that she does back&forth across the living room while making swooshing noises. This (which clearly isn't typical behavior for a 17yo) is one of the primary things that makes me think she is possibly Aspie. She also has social issues, but ADD can cause that as well. She did have a neuropsych eval, but only came out of it with the ADD diagnosis (and she is CLEARLY ADD). Medication did nothing for her at all.

[TravelingChris]

Okay how do you tell severe adhd with social anxiety problems and panic attack problems from Aspergers? I have one that I consider different but not that much so. She doesn't like small talk, girly things, but there is absolutely no way I would consider her anything like a female Bill Gates. She has very good taste in clothing and generally looks fabulous. Someone was describing her Aspergers son and he sounded nothing like her. But when I was writing a letter to a summer program about her need for a single room, I couldn;t help thinking that maybe there is something else here too. So if anyone here has a severe ADHD child and another with Asperger's, could you tell me what the differences are? Maybe point me to some websites?

[Misty]

Okay how do you tell severe adhd with social anxiety problems and panic attack problems from Aspergers? I have one that I consider different but not that much so. She doesn't like small talk, girly things, but there is absolutely no way I would consider her anything like a female Bill Gates. She has very good taste in clothing and generally looks fabulous. Someone was describing her Aspergers son and he sounded nothing like her. But when I was writing a letter to a summer program about her need for a single room, I couldn;t help thinking that maybe there is something else here too. So if anyone here has a severe ADHD child and another with Asperger's, could you tell me what the differences are? Maybe point me to some websites?

 

First thing to know is that girls with Asperger's are usually much different from the boys with Asperger's. They tend to be quieter, more reserved, and do not stand out so awkwardly like the boys do.. They also do not get into as much trouble as boys, which makes it harder to notice anything is wrong.

 

All children with Asperger's are going to have attention issues, anxiety, and sometimes some hyperactivity. Some will have severe issues and some will have mild issues. Most will have some nerdiness or akwardness issues going on (Bill Gates!!).. but not all will... Especially the girls.

 

Some things to look for that would point to Asperger's....

 

Does she have any sort of obsession or a repetitive or stereotypical movement? She has to have one or the other to qualify for the Asperger's diagnosis.. If she always seems like she is obsessed with something (could be anything from books to horses to dinosaurs to a favorite tv show) and has a hard time focusing on other things because of this obsession... OR... if she has any repetitive movements such as hand-flapping, tapping, spinning, chewing, rocking.. this can be ANYTHING as long as it is repetitive or done consistenly when she is excited or upset or anxious. I have one daughter who walks in circles every time she gets anxious.. I have another who flaps her hands when she gets excited or upset (and she's almost a teenager) and another daughter who taps furniture and walls repetitively/obsessively. They also have obsessions to the point where they have a very hard time focusing on anything else. So my daughters have both hyper-focus behaviors (obsessions) AND the repetitive movements. But you only need to have one or the other for the diagnosis.

 

I hope that gives you an idea of what to look for.. Also, Aspies tend to be super smart, but not all are. My 12yr old daughter talks like she is 30 and is a veritable walking encyclopedia, but she can't make a sandwich for herself, has extremely poor handwriting and fine motor skills, and acts like she is five years old if I serve mashed potatoes for dinner (she can't eat anything "mushy"). She throws a big fit with hand-flapping and everything. She does fairly well socially and she has friends, but she tends to talk too much about her hyper-focus interests and she lacks pragmatic (social) language. She is obsessed with reading and writing. She began reading at a very early age and is completely obsessed.. She will cry and throw a fit if we do not visit the library routinely.. She says the library is her "natural habitat" LOL.. My 2nd daughter is not as obsessive as the older daugter, but she has quite a few repetitive, stereotypical movements. My 3rd daughter was obsessed with dinosaurs from a very early age.. She would not play with anything but dinosaurs since she was two years old.. she plays with other things now, but she still has this ever-present focus on dinosaurs.. I think we must own every dinosaur this side of extinction!

 

You might want to try to get your hands on the book Asperger's & Girls by Tony Attwood

 

Anyway, hope this was helpful...:)

[scrapbookbuzz]

My dd definitely has a 'twitch' when she's really frustrated. It's more than a twitch, actually; she balls her hands into fists and bangs the sides of her head with them. It's really heart-wrenching to see. I do my best to not let her get to that point but when she does, I pull her arms down and wrap my arms around her (and her arms) in a hug. That seems to help somewhat.

 

She's always been very conversational with others. Granted, it's often self-focused but, like with many Aspies, she doesn't realize/understand that the rest of the world may not be interested in her current obsession.