I think dd has Asperger's, now what?

[craft_media_hero]

In fact, I feel very certain of it, and now I'm wondering what comes next, how to get a dx (I'm afraid we'll be dismissed because she seems so nt at the surface), how do I adapt my parenting to help her best succeed?

My dd can make eyecontact in conversation with me but has to be reminded in other circumstances. All this time I thought she was being rude . . . When leaving or meeting a social scene, her eyesflit away and her body kinda locks and her voice goes to robot mode and has to be prompted for a flat BYE or HI. Its always been this way and always irked me but now I'm realizing it's not just her being rude.

Social stuff has always been excruciating work for her,but she does like to be part of group stuff, shes just always the odd one out, the one that doesn't 'get it', who has to have explained what the rest of the herd does naturally. She's often spiteful to friends and then crushed at the prospect of losing them


She has tantrummed and peed herself over it even as late as last summer. Extremely argumentative to the point of pathology- like she has this need to contradict even the tiniest things or stuff that she has no clue about-- has anyone observed that kinda behavior in their spectrum kid?

I feel so bad for all my frustrations with her--I had unrealistic expectations and didn't realize her limitations. I am worried about school and want to get a dx so she can get accomodations as this is this first year that she has major testing (csap, we hs thru a charter). She will be 8 in a few weeks.

I am mostly afraid that a psychologist will dismiss us because they wont see all that I see in a casual convo- she can be very 'proper' and often impresses adults with her vocab, etc. Shegets in 'tea party' mode and will chat once the floodgates are opened, its not like she refuses to converse. She will monologue nonstop when she gets on a roll and talks over people, almost like hearing someone else triggers her to drown them out.

Also she lies nearly pathologically, I know not all aspies do thatbut some do, and I really don't know how to help her internalize honesty but I want to be able to trust my dd.

Too much other stuff to get into right now . . .

Can someone point me in the right direction? First steps for a newbie? I dont fully understand AS and I think thats really limiting our successful relationship here.
Edited by craft_media_hero - 7/13/11 at 10:23am

[Emmeline II]

My son has done all those things but while his ADHD diagnosis is firm, an Asperger's diagnosis is up in the air at this point (he was under 7yo when tested).

I recommended a developmental-behavioral pediatrician/clinic like this one; though it can time time to get into a DP and you may have to try a psychologist in the meantime--I'd look for once experienced with Asperger's; if you have insurance the psychologist's specialties may be listed with their name. 

Charter schools are subject to IDEA, so I'd put in a written request for special education testing since you are looking for accommodations.

Your Asperger Child: Diagnosis - FamilyEducation.com

Edited by Emmeline II - 7/14/11 at 6:23am

[Plummeting]

Before I say anything, I just want to mention that I'm not an expert and am just learning more about all of this myself. My daughter was just dx a few weeks ago, and I've been asking my own questions here. :)
 

Originally Posted by craft_media_hero 

Extremely argumentative to the point of pathology- like she has this need to contradict even the tiniest things or stuff that she has no clue about-- has anyone observed that kinda behavior in their spectrum kid?
 

I did want to mention that my daughter does this, too. It's really, really frustrating.

I am mostly afraid that a psychologist will dismiss us because they wont see all that I see in a casual convo- she can be very 'proper' and often impresses adults with her vocab, etc. Shegets in 'tea party' mode and will chat once the floodgates are opened, its not like she refuses to converse. She will monologue nonstop when she gets on a roll and talks over people, almost like hearing someone else triggers her to drown them out.

I also wanted to encourage you not to let this worry you. When one of the psychologist who gave us our dx first met with our daughter, she said, "She was a delight." I don't think psychologists or developmental pediatricians or neuropsychs believe that ASD kids are unpleasant, unsocialized monsters who can be spotted from a mile away. :)

[KimPM]

Some of that sounds like my DS (Asperger's). He can present NT sometimes, and seems precocious to many adults. But put him with other kids...

Re: getting a diagnosis...You'd be surprised at how perceptive a good neuropsych and the therapists are at a center for autism. My DS was DX'd at a big specialized center like that. He was having a good day, and still they caught pretty much all of his subtle things. Plus, they also give you a very thorough questionnaire about your child. I think if it's there, they will see it and diagnose it. Some have said that they don't diagnose Aspergers at a young age. Maybe some places don't, but they had no problem giving my DS the diagnosis. He's a pretty classic case. In any case, it may take months to get into one of those centers...so call today and make the appt. You may not get it in time to start school this year, but get the appt anyway.

[Linda on the move]

While it sounds like something is going on with your DD, your post doesn't scream  "Asperger's" to me.  To the point that the books I ussually recommend for moms trying to figure out and deal with ASDs don't even make sense for the primary issues you need help with.

(I have a 14 year old with Aspergers)

Rather than starting from "this is what my child has, how do I make it official for the sake of school testing,"  I think it would be more realistic to say, "something is different about my child, and I need help figuring what it is and how to best parent her."

Diagnosis come from having a Full Neuro Psychology evaluation. It's an involved process. The person doing it will give your Dd a variety of test, have you fill out more pages of bubble forms that you can imagine (it took about 3 hours to fill out all the questionaires) spend time with your child, and talk to you. It's not like they talk to your kid for 10 minutes and then hand out these heavy labels.

The way I found the specialist who did DDs last eval was through our family doctor.

Other ideas for your DD:

1. social skills class. This is one of the best things we've done for our DD, and it doesn't require a specific label of anything.

2. counseling. I'm wondering if a counselor could help work with her on some of the issues like pathological lying. If she did start seeing a counselor, it could help with the eval because the counselor will get to know her and make being to add insight (the kind of counselors we go talk to aren't usually qualified to make the type of dx your DD most likely has,  which is usually done by some one with a PhD who just does testing and evaluations.)

[Emmeline II]

Quote:

Plummeting

I also wanted to encourage you not to let this worry you. When one of the psychologist who gave us our dx first met with our daughter, she said, "She was a delight." I don't think psychologists or developmental pediatricians or neuropsychs believe that ASD kids are unpleasant, unsocialized monsters who can be spotted from a mile away. :)

That's a good point; everyone I've met with so far (medically speaking) always have nice things to say about ds .

Originally Posted by KimPM 

Some of that sounds like my DS (Asperger's). He can present NT sometimes, and seems precocious to many adults. But put him with other kids...

Re: getting a diagnosis...You'd be surprised at how perceptive a good neuropsych and the therapists are at a center for autism. My DS was DX'd at a big specialized center like that. He was having a good day, and still they caught pretty much all of his subtle things. Plus, they also give you a very thorough questionnaire about your child. I think if it's there, they will see it and diagnose it. Some have said that they don't diagnose Aspergers at a young age. Maybe some places don't, but they had no problem giving my DS the diagnosis. He's a pretty classic case. In any case, it may take months to get into one of those centers...so call today and make the appt. You may not get it in time to start school this year, but get the appt anyway.

I thought ds was having a good day on eval day as well--and he was on medication for the ADHD; but they considered everything I brought up, saw all the subtle things, and if they didn't agree they gave a rational for it and allowed that certain behaviors may not show up the same way in a testing environment.

For ds, the ADHD and SPD complicated the diagnosis; the doctor felt his most Aspie behaviors (social issues) may improve with maturity and therapy and wanted to reeval in a year. Apparently there was quite a debate on the eval committee about it, but I agreed with the doctor; ultimately, a definitive diagnosis wouldn't really change anything at that point for him/us (the therapy would be the same), and she did say to pursue what therapies we thought would be helpful even if they had an Asperger's label.

Our appointment was 9 months from the time we turned in all the paperwork, and it took nearly two months for me to do that (some phone tag involved as well).

Edited by Emmeline II - 7/14/11 at 6:37am

[Plummeting]

Originally Posted by KimPM 

Re: getting a diagnosis...You'd be surprised at how perceptive a good neuropsych and the therapists are at a center for autism.

We didn't go to a center for autism because we were actually originally having a psychoed eval done to test for dyslexia, but I was going to say I think this might be the case with many (most?) of the professionals who regularly work with children to diagnose ASD's. After the first questionnaire they had us fill out (the BASC-2, I think), their meeting with us, and their first meeting with her, they suspected it, even though we never mentioned it at all. That wasn't enough for them to dx, of course, but it did expand the testing that was done. I had sort of considered the possibility of an ASD, but then pretty much disregarded it, because I figured she was just really shy and quirky, with some sensory issues. So I guess my point is that they don't even need you to lead them down the path or anything. If your dd has an ASD, they should be able to figure that out. If she doesn't, they should be able to help you figure out what actually is going on and find some solutions.

[craft_media_hero]

Originally Posted by Linda on the move 

While it sounds like something is going on with your DD, your post doesn't scream  "Asperger's" to me.  To the point that the books I ussually recommend for moms trying to figure out and deal with ASDs don't even make sense for the primary issues you need help with.

(I have a 14 year old with Aspergers)

)

Thank you, Linda. Theres a lot of other stuff that I cant really mention everything-- when I read this http://www.disabled-world.com/artman/publish/article_2255.shtml I really recognized her in almost every description, it's subtle, tho, I think she has gained coping mechanisms and plus she's hs'd so Maybe less opportunity for a third party tonapproach us about intervention so far.

What I'm experiencing now is that the real life folks who I've shared my concerns with (my sis and dh) are blowing me off. It's really frustrating. I want to snap at them 'Don't tell me that my kid isn't the 'different' one in the group!' It is so obvious that she is the 'star shaped peg' and we've always recognized that, it's a beautiful part of who she is in many ways. We see this but are still holding her to the same expectations and system of interactions as everyone else, kids her age, and it's not fair to her.

Which is why I believe I'm ready to push for a dx because really really I just want to understand her and support her to her full beautiful potential and yes, I do want a label sometimes to slap down and explain to people, look this is why she doesnthis she's not just being a brat, she has no filter (as far as the lack of tact and brutal honesty at inappropriate times for example).

Yes, she may have other dx, too, shes been verbally gifted but the opposite with writing especially. Her 'hearing' is odd, too. Flips letters, words, syllables. Gifted with visual art but behind by years compared to her peers in large motor skills, other stuff.

I wish I could get an inside tip on a really great specialist in our area, I did a google search and there are some behavioural centers but no dps as I see so far. I wish my hub was supportive in seeking an eval he will accept that her behavior/ responses are atypical but kinda jokes about it and doesnt get that we need to rearrange how we order our world and expectations here, not just joke about how shes out of bed for the millionth time tonight and then get mad at her for it. I think a dx will snap him out of denial.

I cant help but be really mad at dh for saying 'their parameters are so wide that every kid can fit into that, its just the new word for people to cover their childrens behavior, all kids do stuff like that yadayada' and my sis saying shes just shy (her dd is the same age), problem is dd is not shynshes extroverted and wants friends but has totally no intuition of how to act around them in a way that they wont see as bizarre or rude and then distance themselves from her

Im sad for my dd and I feel so guilty for being angry at her for her perceived shortcomings because now Im realizing that her wheels roll differently and she can still have a good life and successful relationships but we have to change how we relate to her or its really gonna burn her self esteem

[FarmerBeth]

Originally Posted by craft_media_hero 



Thank you, Linda. Theres a lot of other stuff that I cant really mention everything-- when I read this http://www.disabled-world.com/artman/publish/article_2255.shtml I really recognized her in almost every description, it's subtle, tho, I think she has gained coping mechanisms and plus she's hs'd so Maybe less opportunity for a third party tonapproach us about intervention so far.

What I'm experiencing now is that the real life folks who I've shared my concerns with (my sis and dh) are blowing me off. It's really frustrating. I want to snap at them 'Don't tell me that my kid isn't the 'different' one in the group!' It is so obvious that she is the 'star shaped peg' and we've always recognized that, it's a beautiful part of who she is in many ways. We see this but are still holding her to the same expectations and system of interactions as everyone else, kids her age, and it's not fair to her.

Which is why I believe I'm ready to push for a dx because really really I just want to understand her and support her to her full beautiful potential and yes, I do want a label sometimes to slap down and explain to people, look this is why she doesnthis she's not just being a brat, she has no filter (as far as the lack of tact and brutal honesty at inappropriate times for example).

Yes, she may have other dx, too, shes been verbally gifted but the opposite with writing especially. Her 'hearing' is odd, too. Flips letters, words, syllables. Gifted with visual art but behind by years compared to her peers in large motor skills, other stuff.

I wish I could get an inside tip on a really great specialist in our area, I did a google search and there are some behavioural centers but no dps as I see so far. I wish my hub was supportive in seeking an eval he will accept that her behavior/ responses are atypical but kinda jokes about it and doesnt get that we need to rearrange how we order our world and expectations here, not just joke about how shes out of bed for the millionth time tonight and then get mad at her for it. I think a dx will snap him out of denial.

I cant help but be really mad at dh for saying 'their parameters are so wide that every kid can fit into that, its just the new word for people to cover their childrens behavior, all kids do stuff like that yadayada' and my sis saying shes just shy (her dd is the same age), problem is dd is not shynshes extroverted and wants friends but has totally no intuition of how to act around them in a way that they wont see as bizarre or rude and then distance themselves from her

Im sad for my dd and I feel so guilty for being angry at her for her perceived shortcomings because now Im realizing that her wheels roll differently and she can still have a good life and successful relationships but we have to change how we relate to her or its really gonna burn her self esteem

Those "wide parameters" are not that wide.  There has to be enough difficulties, at great enough severity, for a diagnosis to be made.  The diagnoses requires interviews and observations from more than one person in your daughter's life, and the guidelines are pretty specific.  I don't think it's the sort of thing you'll get a diagnoses for unless it's there.

About the lying:  I read that wishing my son had that problem, LOL.  He had the ADOS scheduled in 2 weeks, with Aspereger's as the suspected diagnoses.  One of the things that has always stuck out with him is compulsive honesty.  He doesn't seem to know when to lie if he had to to "save his skin".  He has never used a tactful "white lie".  He'll practically announce a wrong doing or something embarrassing, and say if he accidentally forgot to return someone's pencil and they were and hour's drive away, he'd be fretting about whether it would be good enough to call the person up and return the pencil, later.  In a group of 11 year olds this really sticks out.  I guess we want for our kids what they don't have.

[Linda on the move]

I'm sorry you aren't getting support from your family and husband. It's sadly typical. I agree with you that it sounds like an evaluation is in order, but I want to warn you that getting an official label may not solve you problems with family. When I told my mother my dd's dx, she said, "I don't believe it. She isn't one of THOSE people"

I've gotten real thick skin over the years, and I just research and try to do the best things for my dd. The important thing is that dd gets what she needs, not that others understand.

[Plummeting]

Originally Posted by Linda on the move 

I'm sorry you aren't getting support from your family and husband. It's sadly typical. I agree with you that it sounds like an evaluation is in order, but I want to warn you that getting an official label may not solve you problems with family. When I told my mother my dd's dx, she said, "I don't believe it. She isn't one of THOSE people"

This is what I'm finding, too, and it's very disheartening. :( I had one family member say, "If she's got it, I'd guess she's got a pretty mild case of it," in this tone that implied that they didn't believe anything at all unusual was going on, and if there was anything unusual going on, it couldn't possibly be affecting our lives in any significant way. I really didn't even know what to say, so I just said, "Yup," and moved on. And my MIL said she wouldn't act the way she does if we'd spank her for it. So yeah, a diagnosis doesn't mean anything to some people. They just think you went shopping for something to make you feel better about being a sucky parent (because they're generally convinced that's what makes your kid act the way they do). My husband believes the dx, but even so, he has so much trouble mustering patience when dd is difficult, so even believing in a dx doesn't necessarily make things easier. We're going through a big, protracted move right now, so everything is in turmoil and dd has been so...just mean...to us lately. She's unhelpful, uncooperative, argumentative, melts down over everything, and has begun getting physical with us when she's reached her limit, which is a lot because she can't deal with all the upheaval very well. DH knows that change is hard for kids with ASD's, and he believes she has one, but even still he today said that the only thing left he could think of to do was spank her. He won't because I draw the line at that , but still, it's upsetting that he knows she can't really help it and he's still that angry.

[Piglet68]

I just wanted to tell you we're in the same boat right now. I just figured out DD likely has Asperger's and we have just begun the process. We went to the family doctor to get a referral to a pediatrician. That's in November. That person doesn't actually make the diagnosis, but decides whether it would be appropriate to seek one. I have the same worries as you: DD can function very well, especially in one-on-one situations with adults. But, I have a history of examples of her struggles with social skills. If we can convince the pediatrician to refer us to a psychologist (I've already been recommended someone in my area) then I'm confident they will see what I mean about DD. If they are trained and experienced with AS they know that it can be hard to diagnose if you don't see kids in a social situation, for example. I should point out I'm in Canada so our system probably works a bit differently than yours.

And, btw, she is argumentative in exactly the same way you described for her daughter, lol. Thankfully it doesn't happen too often, but she gets in a mood where she will just keep arguing and contradicting everything that is said to her until she works herself up into a tizzy. And while she has been known to tell a mistruth sometimes, she is more likely to get very stuck on what she believes is The Truth, and those topics are where she gets really argumentative. 

I would highly recommend you read Tony Attwood's book "Complete Guide to Asperger's Syndrome" (if you haven't already). He is of the opinion that AS manifests rather differently in girls, and can be harder to detect. He thinks the incidence of AS in girls is much higher than the statistics tell us b/c many girls are being missed as AS. Here is a link to a YouTube video of him being interviewed on the subject of AS in girls. I also read an article by him on the subject but can't find it right now.

Anyways, I was originally looking at Aspergers for DS, but when I read the chapter on girls in Dr. Attwood's book it explained *everything* she had struggles with in her life. I also have family members (mostly my MIL) telling me that she is fine and doesn't "need a label", etc. But what makes me sad is that she has been struggling silently with this for years and didn't even realize that it wasn't normal to feel that way (getting her feelings hurt for reasons she completely misunderstood, assuming the other kid did it because they don't like her, etc). Whereas DS' issues are much more serious (physical aggression) but he's more or less oblivious and such a happy, confident child. Just knowing what I do now we've had some great talks and it has already helped her a lot. 

So, keep your chin up and know that you are not alone! (hug)

[pauletoy]

We have been trying for a year to get our 7yr old diagnosed. We took him to a psychologist went through the parent/teacher forms which obviously pointed toward Asperger,s. When we got the report she told us it could be high functioning autism or aspergers but she doesn't diagnosis anything other than classic autism until age 9. What a complete waste of time. We have just started occupational therapy for sensory processing disorder. The OT is also addressing the social aspects related to Aspergers. We are finally getting somewhere!

My point in telling you all this is to say:  If you have a gut instinct don't give up. 

[Piglet68]

Oh, you also asked for newbie tips, etc. 

I really enjoyed the Attwood book I referred to above, but the one that brought me a lot of comfort was the Oasis Guide to Asperger's Syndrome. It is written from the perspective of parents and discusses all the emotions you go through, etc. I found it very comforting to read. 

You are also going to have to decide what you are going to do with this information. I struggled with this a lot in the first few weeks, but now I am feeling so much better having decided on how to proceed. There are people who don't believe you should bother with labels, just treat your child as the individual they are and forget about a diagnosis. I understand and respect that approach but for us we decided to get a diagnosis. This is partly because we homeschool in an amazing program for unschoolers that has a wonderful special ed department (and the diagnosis means they'll be able to give us extra funding for programs or therapies of our choice), plus there are HUGE tax advantages for having a child who is classified as "disabled" (DH and I are both self-employed so this is very significant for us; we're talking over $25,000 in the first year you claim), and of course since the kids are not in school there is no reason for anybody to know about their diagnosis except those we choose to tell, so they aren't walking down school hallways with a big AUTISTIC sign above their heads, if you kwim. In terms of therapy we are going to stick to social skills clubs for DS (where he can finally go out and play with other children without having his mother shadowing him everywhere!!) and we'll see about DD. Mostly she just needs someone to talk to (she loves to talk and is very open about her feelings) who can support her, like a psychiatrist. I'm still lacking a lot of "tools" to support her with her issues but I'm learning and I feel confident she may not need much assistance now that we've figured out what the underlying issues are.

You will have to sit down and make a list of all the issues your daughter has. Then decide which are maybe "quirky or mildly annoying but you can live with them" versus those that are truly disruptive and negatively impact your family life. The latter are the ones you may need outside help with, and that can come in a variety of forms. The books I recommended will lay the types of therapy/treatment all out for you and you might find something that clicks for you (or you may run away screaming, depending on where you are at parenting-wise, lol). But there are more things you can do than just sending them off to a therapist or behaviouralist. Ask around in your local community and talk to other mamas of ASD kids. Find out who the "good people" are, the good programs, and find out exactly how they are run. If the people you ask happen to be crunchy, positive-parenting, unschooling type parents like you (if that is you) then there's a better chance that the people they recommend will be more appealing to you, too. 

HTH!

[Emmeline II]

Originally Posted by craft_media_hero 

I wish I could get an inside tip on a really great specialist in our area, I did a google search and there are some behavioural centers but no dps as I see so far. I wish my hub was supportive in seeking an eval he will accept that her behavior/ responses are atypical but kinda jokes about it and doesnt get that we need to rearrange how we order our world and expectations here, not just joke about how shes out of bed for the millionth time tonight and then get mad at her for it. I think a dx will snap him out of denial.

I cant help but be really mad at dh for saying 'their parameters are so wide that every kid can fit into that, its just the new word for people to cover their childrens behavior, all kids do stuff like that yadayada' and my sis saying shes just shy (her dd is the same age), problem is dd is not shynshes extroverted and wants friends but has totally no intuition of how to act around them in a way that they wont see as bizarre or rude and then distance themselves from her

Did you check for the staff?

When I do searches for people I use search terms like these:

• developmental-behavioral clinic yourcity or yourstate
• behavior clinic yourcity or your state
• developmental-behavioral pediatrician yourcity or yourstate

Often these types of clinics are in hospitals. Sometimes I find clinics/hospitals by finding doctors first and checking where they practice from.

As for you dh-- ds' evaluation was about 3hrs long AND the results appointment was just as long because the doctor explained EVERYTHING they tested and what it meant. Also, they test ds at his exact age 6 years, 11 months; not 6 years old, not 7 years old, and (as a pp said) "There has to be enough difficulties, at great enough severity, for a diagnosis to be made."

And therapy that includes "parent training" can be important, because what may be affective in handling a typical child probably won't work for your dd, and there is help for parents in that regard.

[craft_media_hero]

Thank you all so much for the replies.

Dh goes back and forth; I believe its because hes in denial, as I have been unti recently and he uses humor to break the tension. We both could really benefit form parent training. Ive been talking abt it a lot w him and I think its starting to sink in and today he said where can we get an eval so that is progress.

We are starting family counseling, so At least thats somewhere to begin and I will keep looking for a specialist; I am serious abt seeking eval now.

Dd has been 'mean' lately as pp described, and with other stuff its causing stress on our marriage.

On the bright side she is blooming at girls on the run camp this week and last night picked up a pretty busted up and badly detuned kids guitar, tuned up by ear and taught herself to strum and was intuitively picking notes that went along with the radio, all self led, self taught, neverdone this befor, wow! Shes. So awesome.

We went to farmers market last night and by perceiving her thru this new light, I am understanding her so much better and already see improvement in my parenting. Also the atypical stuff is really sticking out to me more. Like she really thinks people walking toward us are going to just run into us and tread us over if we dont dodge out of the way- most kids understand the normal flow of bodies in the street; I didnt realize she had this real anxiety, and I needed to explain that they will go around if we stand here, they wont run us over.

So. I feel relieved. And scared too for her future but so relieved to accept this. Lots to process.

Thanks for commisserating about folks dismissing your dcs SNs, I didnt realize that was such a typical response, now I can blow it off a little more!

sorry for formatting, Im on my ipad and in depth stuff is a bit of a pain to type fast.

[nayma]

another vote for go with your gut.  i found this helpful..

http://www.iancommunity.org/cs/articles/girls_with_asd

where do you live?

[craft_media_hero]

Nayma, thanks, thats a great article. I live in Western Colorado. Ive been observing dd through this lens since my op, and I am certain that she is not neurotypical. So much managing of her bahavior for even very simple situations, the way she talks, her descriptions of not being able to understand value judgments of her needs and other situations, the obsessing, food obsessions, trigger foods setting her off, saying she always feels rushed, she does everything soooooo slowly, being overwhelmed by sounds, not being able to 'see' big things right in front of her but picking up on detail stuff that no one else notices, same w hearing-not processing coversations but hearing a whisper across the house about other things, mega anxiety and I think depression, too. Needing ridiculous amounts of heavy physical exertion for her mood to stay level, has always had sleep issues, etc.

She does make eye contactand point, but cn pointing be learned even if its not intuited? I remember her really taking a long time to get pointing, whereas my 1yo already does it.

But at the same time, Ive had others (my sis who is scoffy at my ?ing) tell me that she is not like the AS kids they know (boys), I really have nothing to go off of but what Im reading because I dont kow any aspie kids IRL (except for possibly my own). But it is a spectrum! And you have pointed out with the article tht perhaps AS girls are getting overlooked.

I am just scared that if we get her dx'd then it might "follow" her, I know thats not a reason to skip what we need now, and I do think that she will need special consideration fo school testing, and we definitely need some parent training. I just dont want people to dumb down how they treat her or for her to feel like theres smth wrong with her if she gets dxd asd. But she is different and I think that its starting to become apparent to her, too.

I guess I am just feeling how crucial of a decision this is to follow through on, and its scary coz nobody is on board with mehere in real life.

[Linda on the move]

Originally Posted by craft_media_hero 
 

....I just dont want people to dumb down how they treat her or for her to feel like theres smth wrong with her if she gets dxd asd.

Once you have a dx, you control who gets to know it and who doesn't. It's not like they tattoo it on the kid's head or anything.

We've had overall very good experiences with people knowing DD's dx. She's in school and I'm 100% open with the school, of course, but I find what other people need to know varies with the situation and DD's age. For some situations, just knowing about DDs sensory issues is enough. I keep it simple.

Second, my DD has spent time in counseling and talking about her dx was part of that. I've also found books for her that were helpful (though she is older than your DD so different books would be more appropriate for your DD). DD knows her dx and her history, and feels that she is completely normal for her, for a person with Asperger's. She feels really good about herself at this point. She hasn't always; it's taken work to get here. But it is possible for a kid to know they are different than most people and come to accept themself.

One thing that's been on my mind lately is that everything is OK. "OK" is just a lot different than I thought it would be. What I used to think that things had to be like in order to be "ok" wasn't how things turned out at all, and yet they are still "OK."  

Everything is OK.
 

[Plummeting]

Originally Posted by craft_media_hero 

She does make eye contactand point, but cn pointing be learned even if its not intuited? I remember her really taking a long time to get pointing, whereas my 1yo already does it.
 

Most kids with Asperger's do make eye contact, just not as much eye contact. Also, my dd always pointed to ask me what things were when she was little, but I don't remember if she did to show me things. Now she will point to show me things sometimes, but not all the time, and I don't even know if she learned it on her own or if we explicitly taught her. When I go back through my mind, there are many things we've taught her that didn't seem at all significant at the time, but now make me wonder how I never realized that I shouldn't have to be teaching her stuff like that, so there's a good chance I did teach her to point at some time and don't even remember it. I know I have told her to point at things in the past, when I had no clue what she was talking about, so maybe I did. Also, my daughter, while she does sometimes point, does NOT follow a point. She doesn't look at you to see where you're looking or see if you're pointing. She just starts going, "Where? Where?" frantically turning her head this way and that, until directed to look at your finger, then look where the finger is pointing. We've been working on this with her for probably a year or more. She's 7.