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snobordnwifey
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03 Jun 2010, 7:46 am

I'm just curious what everyone's experience with this is. My 7 year old daughter was diagnosed last year with AS by a psychologist who specializes in ASD's. Our school is saying they don't believe she has it because she scored so low on the ADOS. They base this on her ability to hold a reciprical conversation and her ability to engage in pretend play. They said they had never had someone score so low on the ADOS before. She has been in speech therapy since before she was 2, so she's really used to being in a 1 on 1 testing/therapy type situation...and she is an attention seeker. She can converse quite nicely with an adult (who typically stays on her topics).

In researching around on the internet, it seems that some experts feel girls aren't being diagnosed as much because their symptoms present differently. Since girls are more social inherently, they tend to watch and learn to mimic as much as possible. I've also read a few places that they do engage in pretend play, though, like my daughter, it's not your typical girls pretend play (pretending to be princesses, etc.) My daughter's pretend play tends to revolve around "talking guys" (making animals talk). In these scenarios where she talks guys with her 5 year old sister, she is always the one in control and is mostly acting out social rules (sending the animals to time out, etc.). There's never any type of pretend play where she makes the animals go to a zoo or anything like that.

I guess I'm just frustrated because I feel like my daughter does have AS and they are completely negating the fact that she has learned to cope in certain situations. They don't understand why she has meltdowns or aggressive moments are school. They only thing they can come up with is that it's attention-seeking behavior. She seems to feel she needs 1 on 1 attention at school and if she doesn't get it, then she will get it some way or another. However, if she was really attention seeking, wouldn't she be attention seeking from the other kids as well?

When I hear other parents talking about their AS kids, there are so many things that remind me of my daughter, so I guess I'm just upset that she school is completely disregarding her diagnosis and only saying that she has emotional/behavioral issues.

Really, I guess I just want to know what other AS girls act like? The sp. ed. admin at our meeting said "The girls I've seen are completely aloof and don't function nearly as well as your daughter."

My daughter can:

-hold a reciprical conversation with an adult, but typically ends up back to any specific topic that she was interested in.

-rarely pays attention to other people's conversations (at the dinner table, if someone isn't engaging her, she doesn't have clue what others are talking about for the most part)

-engages in pretend play, if it's on her terms...and it's not super imaginative....mostly involves power struggles/controlling the situation (however she can engage in scripted play...for instance if someone tells her to put a baby to bed, she can do it).

-reads exceptionally well and comprehends what she is reading

-has motor delays (can barely ride a bike with training wheels...can't keep any type of prolonged pressure on anything i.e. pedaling up a slight hill, opening jars, turning keys in a lock, etc.).

-has an extreme interest in bugs and animals (especially dogs), yet is unable to be kind to animals (impulsive). However, she has become a vegetarian because she doesn't want to hurt animals. She also gets exceptionally angry if someone steps on a bug.

-sings often and continues singing the same verse over and over and over (especially in the car)...dislikes loud noises and gets overly anxious about them.

There is a lot more....but this is getting a bit too long. I guess I just want to know how other girls with AS act in your experience.



Last edited by snobordnwifey on 03 Jun 2010, 9:02 am, edited 1 time in total.

jamesongerbil
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03 Jun 2010, 8:19 am

I am sorry for your plight. I am a HUGE mimic-er. I mimic-ed through out my childhood, without really knowing what I was doing. Didn't really learn much, but I got by enough to learn how to basically socialize at a very young age. How can a school override a professional's opinion? Looks like they need to open their eyes.



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03 Jun 2010, 10:22 am

Her pretend play sounds a bit like mine was as a child. If you don't agree with the professionals who have seen her so far you can always seek a second opinion somewhere else.


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03 Jun 2010, 10:46 am

When she becomes a teenager, she might become obsessed with a boy band, old or new, and that might be all that you hear about. Don't make her feel like a crazy freak about it, by sending her messages that it's bad to talk about that group, like my parents did to me, when I liked The Beatles, at 13.


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03 Jun 2010, 12:04 pm

It sounds like the is an issue with the school, not with your daughter's diagnosis. Have you checked the Wrightslaw website? http://wrightslaw.com/ They're a good resource for school legal issues. I'm not sure what else to advise, except perhaps to find an advocate.

Do you have any local groups for parents of special needs kids? They're often your best resource for finding out how things work in your area and what you should do.


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03 Jun 2010, 3:08 pm

I think that something that plays a part in girls being under-diagnosed is that some believe that's it' just a boys thing, another thing (possibly) is that girls are expected to be more socially aware younger. Although, that's just my theory.

You have my sympathy about what you and your daughter are going through.



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03 Jun 2010, 5:31 pm

I grew up in a time when "girls don't get ADHD" and I had ADHD. It was a source of constant frustration and conflict for myself and everybody who cared about me. Girls present differently to boys with AS and it can really throw things off. They are typically more socially competent.

I think the most important thing isn't the label but that they will give her the services she needs most. I wouldn't fight too hard about the label as long as she gets that I'd save my strength for the battles you can win. I've had to do that with my little guy. If they'll give him the right services, they can call him an Aardvark. Eventually you probably can get them to accept the right diagnosis and you'll be doing AS girls everywhere a service.

There's a little girl around the corner who has AS and your girl sounds a lot like her. She's a sweet girl, but comes across as obnoxious sometimes because she has a hard time not having things her own way. My kids, two of whom have AS as well, and the third isn't NT either, don't want to play with her because she's so rigid and her social perception is one sided. She has two way conversations but seems selfish because she isn't able to tap into other people's feelings. It's very ironic that my boys don't like it when they aren't skilled in that way either, they are just less outspoken about it. It's funny how basically the same symptoms can look so different on boys vs girls at times.

I hope you can get the school to accept her diagnosis. You're already way ahead of us with my ADHD struggles because you at least know what it is.



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03 Jun 2010, 9:28 pm

snobordnwifey wrote:
I guess I'm just upset that she school is completely disregarding her diagnosis and only saying that she has emotional/behavioral issues.


i think you've nailed the reason girls / women aren't getting diagnosed.

everything we do is perceived as an emotional issue.

and the general consensus is girls are:
1. more likely to mimic / act normal
2. less likely to pontificate or talk to uninterested parties about their interests
in other words, i think from a young age girls get an idea how they are supposed to act as per their gender, are more polite and less likely to act up .. so why would their behavior be considered a problem?

check out this topic:
http://www.wrongplanet.net/postt109221.html


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NikonRox
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03 Jun 2010, 11:07 pm

Hi snobordnwifey,

I found the same issue happening with my AS dd at school, also. At the time her dx was pdd-nos (dx'ed by a pediatric psychiatrist and a developmental pediatrician---dd was 5 at the time, she is 14 now and dx'ed AS) and the school psychologist told me that my dd wasn't "autistic" because she talks to classmates (he totally disregarded the other professionals' dx). The school classified her as "other health impaired" in her IEP so at least she got services: OT (very uncoordinated), speech therapy (language skills were not good even though pronunciation was ok), and resource room reading help (reading skills were behind, and are still behind peers, by about 2 years).

Some of the things you mention with your girl are similar to mine when she was little (3yrs.- 5yrs.). She played with animal toys, but pretty much directed the play scenarios. It was almost always the same scenario...one animal in danger and the other animal "helping". Most of the time it was a "mommy and baby" animal. Sometimes it was potato chips...big chip was mom, little chip was baby, or rocks...big rock was mom, little rock was baby, etc. It was the same basic play scenario over and over. But, if you only saw her do it once...like the casual observer...it would not have stood out as odd (ok, maybe when she was using the potato chips or rocks!).

Anyhow...she really loves animals too, but also has accidently hurt them because of impulse or not knowing her own strength. She had/has good eye contact, but couldn't tell who was a friend or foe. She would wander off with anyone and not think twice about it. She wasn't good at identifying faces...if a stranger had a similar hair style and hair color to a friend or relative, she went right up to the stranger thinking it was her friend or relative. She would approach strangers that were not acting at all friendly and just start talking to them. But, she was a terrible conversationalist and her sentences were always all jumbled up. When she talked, people would look at me with a confused look on their faces.

She would rock and hum, especially in the car. She could keep the rocking and humming up for hours. She had horrible screaming temper tantrums, she was hyperactive…touching everything in sight. I could not take her out visiting, I wouldn’t get a chance to sit to visit for even a moment…she would touch everything…stick her hands in full aquariums, drop small toys over ledges…you name it! And she would scream, scream, scream if I stopped her. It was easier to stay home!

She liked to drop items into liquids…legos into coffee, small toys into koolaid… if a drink was left sitting where she could reach it, there would most definitely be a toy floating in it within minutes. She had to be watched every second or she would dart off towards danger.

She is now much, much more sedate, anxious, quiet, and cautious compared to the younger years. She does not rock, approach strangers (in fact, now she is very shy) or act much like she did when she was younger. She still has trouble with reading and is anxious about doing everything “right” or perfect. She is still a bit uncoordinated and doesn’t play sports. She wants to be exactly like her peers at school…same styles, clothing labels, etc. but it is more of a mimicking thing, rather than the “usual teen way” of being. She asks me a million questions “why” things are this way or that, almost like that is the only way she can figure it out, like a scientist on a mission! When she is alone and can be herself, she likes nature, drawing, animals and computer games.

I think she has grown into a very interesting and unique young lady…no trouble at all for the most part. The school does not see “AS” in her, but it is there. I think it may present itself a little differently in girls.
Best wishes for you and your daughter.



snobordnwifey
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04 Jun 2010, 9:34 pm

Wow, your daughter sounds so much like mine, it's strange! She, too, seems to be quite interested in liquids, but not obsessively. She loves to wash dishes, but she'll wash the same dish for 2 minutes...I think she just enjoys watching the water flow over it. She will stay in the bath for hours if I let her....she loves swimming. I always thought it was a sensory thing...but maybe it's that water is just interesting. She loves anything to do with science and nature...especially bugs, but she has a million questions about it. I never thought of the reason why she asks so many why questions (most of them I can't even answer b/c I don't really know the answer...or it's just the way things are and that's not a good enough answer for her).

When I have her one on one with not a whole lot of distractions, she is a completely different child. I can really engage her and we do quite well. However, I have 3 younger children, so that doesn't happen a lot. Lately we've been having so many meltdowns. When her 5 year old sister wants to do anything different/play the game differently/be different animals than T had in mind, etc., it just goes directly to a screaming fit. I have NO idea what to do to help her with this. We are trying to work on coping skills....but most times it doesn't make any difference....she just can't handle things not going her way. It was nice to hear that your daughter seems to have outgrown this. I'm at a point where I'm trying to figure out what to do...whether I need to just accept it and believe that she will mature, or whether I need to find a way to really get through to her that it's not acceptable (no idea how to do that).



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05 Jun 2010, 2:39 pm

Been there. Done that. Got the t-shirt. Also got sick and tired of people saying there is nothing wrong with my daughter. People not qualified to do so. It meant that she didn't get diagnosed until she was 15 and as a result missed out on years of help and support. Tell them straight, it doesn't matter whether they think she has it or not, you know she does and you have a diagnosis from someone qualified to prove it. Then ask them where they got their medical degrees. Grrrrrrrrrrrr. (you may have noticed that people like this make me furious)



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06 Jun 2010, 6:25 am

Tell the school if they want to debate it to give the doctor a call and they can argue with the doctor or they can shut up and provide your daughter with the services and supports she needs to succeed in school.



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06 Jun 2010, 10:26 am

I am sorry you have such a difficult time with the school, and can totally understand your frustration. Do NOT allow them to make your second guess what you know, and what the diagnosis has told you. They are not the experts on your child, you are. If you have to move your daughter to a different school to get her needs met, then do it. I wish I had more to offer you, but maybe what I've said is step 1.


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07 Jun 2010, 10:20 pm

I think you need to calmly step back, and bring the school back to focus here. The issue is not her diagnosis - that is for her doctor to decide. The issue is her time at school, and how can you, and the teacher, and the principal, and everyone involved work together to make this childs' school experience the best it can possibly be.

If they don't want to "believe" she has AS, fine. Let them not believe. You are only wasting energy fighting them when you need to be working with them. Find the strategies that work for your daughter, and bring your suggestions to the table at the school.
For example, she's having meltdowns because... she's overwhelmed, she is expected to change plans with no notice, there's too much light, she gets no social "break" all day.. whatever.

Explain what you think might be causing these behaviour problems, and what you think might help diffuse them. Practical suggestions the teacher -who has limited time and resources mind you- can attempt. Does she need a quiet place she can escape to if she's feeling overwhelmed? Does she have a way of telling the teacher she needs to go to that place? Could the teacher accept a card, for example, that your daughter could give that says "warning" or "careful" or "quiet now"? And know that that card needs to be taken seriously?

Then ask for their input. They might have suggestions that could work as well.

I read a book called "How to make school make sense. A parent's guide to helping the child with Aspergers Syndrome". It is really good and has a lot of suggestions. I'm having tons of trouble with my son at school, and I'm creating a plan to help him even more next year.

My point is, fighting isn't helping your daughter. You've got to work with the school and the teachers and start trying new strategies together. You may not be entirely happy with the way they see things, and they may not be happy with the way you see things, but if your daughter could be happier by working together, then you've got to try.


Also Tony Attwood wrote a book about girls with AS. I've been desperate to get my hands on it but can't find it. Apparently it's really good.


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08 Jun 2010, 1:51 am

I don't know about the whole "girls with AS blending in" thing because I certainly didn't.

I wasn't even aware that I should be mimicking anything until I was a teenager.

Anyway though, I can hold a very coherent conversation, and was always capable of doing so with adults, other kids...not so much so because we weren't really on the same level.

Anyway I'd just tell the school, whether they believe she has AS or not, she has issues that need to be addressed or she's going to keep falling apart at school.

What they are really trying to do is save money. Obviously, if money weren't an issue and you said "my kid needs" whatever, they probably wouldn't hesitate to provide it.



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08 Jun 2010, 5:32 am

The advice typically given in my 'hood is to phrase everything in terms of danger, then the school feels obligated to provide safety.

worried about ... xyz... posing a significant danger to fragile self esteem.

worried about.... xzy... posing a significant danger of putting child at risk of bullying.

As a parent it doesn't feel good to write up a list of all the dangers your child faces. As a school board it comes down to the money. There is not a lot of money to go around and not a lot of time to decide who gets what. Discovering the catch phrases used by your local board of ed will be key.