Very long, please take the time to read

[KAMKIM]

I posted this in the other community board and was told I might be able to get some more opinions if I posted here....so here goes..

I have posted about my DD8 before so some of you may know she is a painfully shy, sensitive child...always has been. Every school year has been pure hell for us both. She doesn't have many friends and has a VERY difficult time socializing with other kids.

As a toddler she preferred adults over kids her own age, well not even just adults, adults she knew and was comfortable with. At the same time she has also been very smart (no she isn't gifted and does not have an IQ of 160+) but just always ahead of the game...

DD has always been quiet/shy/smart so in most cases a teachers dream - never brings attention to herself.

for example

preschool - did not interact or play with the other kids, cried every morning, and any time I showed up at the school (like for parties) they did the kindergarten assessment which places them at an age...most preschoolers would get age 4 or 5 probably depending on when their birthdays fell..DD got a 6+ which meant she was off the chart...her teacher and I didn't expect anything less, we knew she was smart..no big deal..

Kindergarten - same thing, emotional, shy, sensitive, cried alot during class but excelled academically..

1st grade - same thing, started interacting more with other kids even to the point where she got reminded to not talk during class work time (I was secretly thrilled) - excelled academically reading level was end of year 2nd grade, so about 2 years ahead of the game...

2nd grade - still a quiet/good student - but resorted back to shy, sensitive, emotional. Teacher mentions she has organizational issues, keeping her desk clean etc, seems to be distracted/and daydreaming - she also started having hearing problems - so we thought/think - you would have to ask her to do something several times and make sure it was directly to her. Several hearing tests later and they all came back with different results...moderate hearing loss, normal, slight hearing loss, normal, moderate hearing loss...etc. ENT and I conclude maybe it's allergies....take her to the allergist - she's allergic to a few things no extreme reactions but maybe enough to affect her hearing..okay she goes on claritan at end of school year...teacher says hearing seems to be improving but again it was always, normal, not normal so we dont know if the claritan helped or not.

3rd grade - emotionally a little better than previous years especially considering it was a new school year which was always difficult for her, we've had some bad nights/days...still very shy...no new friends, feels like she is left out etc....but I sent her teacher an email this morning and asked how she was doing, socially, was she staying organize (I put a little reminder on Mondays in her assignment book to clean out her desk) and did she notice DD had been daydreaming? I also tell her about the hearing loss episodes.

Teacher writes back and says DD is interacting with kids socially somewhat during reading groups and lunch, and recess...her desk is organized and DD is cleaning it every Monday. But then she says she is glad I mentioned the day dreaming because she said DD is distracted and people watches alot during the day...and she has a hard time with transitions...reading time is over and the other kids are getting out their material for the next thing and DD is still reading - so she has to be reminded to move along to the next thing (it isn't just with reading thoguh so it's not that she doesn't want to put the book down) So I mention the hearing loss and she said she would watch for it. She also said DD is making careless mistakes on Math.


Now a few weeks ago DH asked me if I ever thougth something was "wrong" with DD - it caught me off guard, because I have thought that but either didn't want to admit it or assumed I was being the paranoid overreacting mother I usually am - especially because she is just always been known as the smart kid - so how can something be wrong with her, but something has always felt "off". Him and I talked about it and we cant pinpoint what it could be or maybe she is just socially akward....here a few off things I've noticed about her - I dont know if any of them have anything to do with the other but just some things that I think most people dont do...

She doesn't eat meat or heavily seasoned foods...she eats spaghetti no sauce no meat, tacos, no meat - just cheese and lettuce...no cereal, pizza but no pepperoni or if there is too much sauce she wont eat it...she does eat bread, pasta (no flavor), veggies (all kinds again as long as they dont have a strong taste, she'll loves cucumbers lettuce...fruits - will eat most fruits.

She is sensitive to fabrics, like all of her clothes are cotton or fleece...nothing scratchy, she doesn't like that.

Very sensitive to sound, loud noises or DD5 clapping over and over again (somtimes this drives me nuts too though) but this really upsets DD8

Cannot pay attention for very long but still does very well academically.

Gets distracted easily - people watches alot

She is very mature (when she isn't having a meltdown) for her age, seems annoyed but very interested in the other kids.

She sometimes gets very bad headaches especially when she cries which just feeds the headache and the crying - responds to motrin though

Overall her personality is pretty balanced but has a tendancy to lash out or become very emotional - extreme crying, very negative

has NEVER slept through the night.

When she was younger used to be extreme with imaginery friends, for example scooby doo - every conversation was about scooby doo - but elaborate. Like I know most kids have a favorite cartoon character, but when DD was 5 she would carry on half hour conversations about how scooby and the gang took her on this mystery and said or did this...seriously a half hour of details of something that never happened, we thought it was cute/annoying but now that my younger DD is 5 - she doesn't do anything like this.

If she tells you about a dream she's had, you seriously have to stop her because she will carry on/make up details until you really cant sit there anymore - she wont stop unless she is stopped...again in such detail that either she's lying and making up the details about the dream or has an incredible memory.

When she does play with DD5 its never spontaneous play, she will tell DD5 "okay you are underdog, say this......" DD5 complies, then DD8 will say...now say this...she is like constructing her own play - do you know what I mean? It's never just playing, I thought this was a discipline issue and have told her she isn't playing - she's controlling, its not fun for anyone but her...but now I'm wondering if it's something more.


UGH if you made this far, bless your heart. Are all/some of these things normal? Who do I take her to if it's not? Do you know any kids like this? I dont! My DN is the exact some age and not even close to her intelligence/maturity maybe because he is a boy...but he does not act like this...he seems so...simple, I dont mean that in a bad way, but he eats, sleeps, plays...almost like DD5 - kwim? DD8 seems to have so many little issues but I dont know if I should be concerned because she is so smart....

 

[KAMKIM]

I just want to mention a few more things, 1 she has always done well during her yearly check ups, Ped knows about her eating "problem" is not concerned she is a healthy weight and slightly tall for her age 2 this was extremely difficult for me write. I have always had a gut feeling about and it kind of frightens me because I was the exact same way as a child (not the eating part though). I also know she knows she is different somehow. I cant talk to anyone else about it because they all hold her to such a high regard "your so lucky your daughter is so smart, I wish my child was like yours" etc....little do they know...plus like my mom doesn't believe in ADHD, Autism etc - in her time I guess those were the kids that just needed an extra spanking. I can assure you she is not spanked, but discipline really is not an issue in our house. For the most part she is very well behaved.

But another thing I noticed is that she is extremely neat but not organized...for example we removed a pool from our backyard and put in a new one, the old pool left a big circle of dirt obviously, it had rained the day before and it was a hot day so my nephews, and DD5 took off their shirts and were playing in the mud...DD8 stood there and looked at them like they had 3 heads, she is like this - doesn't like to get dirty but isn't organized at all. One speck of mud landed on her arm and she FREAKED, cried, and ran in the house.

 

[bookwormde]

Ok where to start.

After the varied hearing test reports, none of you clinicians recommended an auditory processing evaluations? They should have since the symptoms you explain are classic for processing differentials.

Now there is nothing “wrong” with your daughter, she likely has some neurological differences from the mythical average typical child, but when understood and addressed should not limit her potential (in many case may enhance it).

She has all the classic indicators of Aspergers (social skills deficits, heightened abilities and interest in certain areas while having challenges in others), sensory differentials, different discriminatory profile (prefers adult to children), different EF system (executive function, the way the brain processes information), anxiety meltdowns and so forth.

She clearly is one of the for the most part “self adapters” which is an amazing talent into its self. If she has been able to thrive to any extent without support and understanding indicates that she is very intelligent, creative and imaginative.

The first thing for you to do is to go get a copy of Tony Attwoods “The Complete Guide to Aspergers (available on Amazon for a bout $25 or it child be in your local library but you will want your won copy eventually) and read it immediately.

Unfortunately it is not encouraging that the school has not recognized this at some level (even though female self adapters are the least recognized).

Make an appointment with your schools ED (educational diagnostician) and go over the history review that you have posted and I will be surprised if before you mention it that he/she does not.

Now the “bad thing” is that for districts that are not “sophisticated and experienced” with Aspergers self adapters are hard to get the educational classification to formally get the supports that she needs, but many schools after recognizing the characteristics and manefestations will address them informally to the extent that it will make major improvements in your child’ ability to get an appropriate educations.

Make sure your clinician do the Auditory processing evaluations and gives concrete recommendations and let them know that there are other Aspergers characteristics indications.

Start your search for a clinician or clinical group which has extensive experience with female Aspergers children and understands “self adapters”. This may take months and tenacity but it is worth “doing it right the first time”.

Congratulation you most likely have a very special child with amazing potential well beyond that of an average child, now you have lots of work ahead to allow her to meet that potential.

Most clinicians and people use their perception of classic autism as a point of reference for Aspergers so often are dismissive for lack of competence and education in this area

IF you have any other questions please feel free to ask

bookwormde

 

[KAMKIM]

Ok where to start.

After the varied hearing test reports, none of you clinicians recommended an auditory processing evaluations? They should have since the symptoms you explain are classic for processing differentials.

Now there is nothing “wrong” with your daughter, she likely has some neurological differences from the mythical average typical child, but when understood and addressed should not limit her potential (in many case may enhance it).

She has all the classic indicators of Aspergers (social skills deficits, heightened abilities and interest in certain areas while having challenges in others), sensory differentials, different discriminatory profile (prefers adult to children), different EF system (executive function, the way the brain processes information), anxiety meltdowns and so forth.

She clearly is one of the for the most part “self adapters” which is an amazing talent into its self. If she has been able to thrive to any extent without support and understanding indicates that she is very intelligent, creative and imaginative.

The first thing for you to do is to go get a copy of Tony Attwoods “The Complete Guide to Aspergers (available on Amazon for a bout $25 or it child be in your local library but you will want your won copy eventually) and read it immediately.

Unfortunately it is not encouraging that the school has not recognized this at some level (even though female self adapters are the least recognized).

Make an appointment with your schools ED (educational diagnostician) and go over the history review that you have posted and I will be surprised if before you mention it that he/she does not.

Now the “bad thing” is that for districts that are not “sophisticated and experienced” with Aspergers self adapters are hard to get the educational classification to formally get the supports that she needs, but many schools after recognizing the characteristics and manefestations will address them informally to the extent that it will make major improvements in your child’ ability to get an appropriate educations.

Make sure your clinician do the Auditory processing evaluations and gives concrete recommendations and let them know that there are other Aspergers characteristics indications.

Start your search for a clinician or clinical group which has extensive experience with female Aspergers children and understands “self adapters”. This may take months and tenacity but it is worth “doing it right the first time”.

Congratulation you most likely have a very special child with amazing potential well beyond that of an average child, now you have lots of work ahead to allow her to meet that potential.

Most clinicians and people use their perception of classic autism as a point of reference for Aspergers so often are dismissive for lack of competence and education in this area

IF you have any other questions please feel free to ask

bookwormde

wow your post really hits home. Especially recognizing her ability to adapt, because I too have noticed this. Her teachers have touched on her distracting behavior and day dreaming but I think because she scores so high in most subjects (math she makes careless mistakes) they overlook it.

I told DH yesterday, if she does this well with no intervention or help, imagine her potential if we can get her help.

I am calling her pediatrician today to get this ball rolling. I wonder if it's possible that they wont recognize this symptoms and just blow it off as her being smart?

Can you tell me what type of tests you suspect she'll need to go through? She does not do well with any type of medical....test I guess you could say, physicals she has always been reserved during (who isn't?) but anything else that would involve, pain or machines - well, it is VERY difficult for her to go through. Would these tests be more like her answering questions? Do they do blood work? MRIs? things like that?

 

[ireland_nicole]

at least in DD's case, all of the testing (aside from her multiple medical issues) has been done by neuropsychologists, etc. Some of it is play based; a lot of it is taking tests and answering questions like at school.

All of the testing is based on boys, though; symptomology of boys, behavior of boys, etc. The thing is, girls are completely, totally different. Science is starting to catch up, but not there yet. Try to find someone in your general area (we're quite used to driving 3 or more hours each way) who has experience evaluating/treating, etc. girls specifically.

It sounds like your DD is a wonderful, bright, creative girl who may have an interesting neurological variation; if so, it doesn't change who she is, but getting a full understanding may help you help her in the future.

I strongly second the necessity of looking into an eval for auditory processing issues, as well.

 

[bookwormde]

Nothing invasive, no scans

There is the standard IQ testing, one of a couple of scoring test for Aspergers, questionnaires to parents and teachers about behavior manifestations to indicate social, sensory, attention/EF issues. Typically an evaluation of coordination and usually several sessions with a psychologist to personally observe her. The auditory processing evaluation (which shows how she remembers, organizes and processes linear auditory input. There are other evaluations and rating scales that are used but they are somewhat variable. Highly qualified clinician and practices will be very good at gaining the information they need without increasing levels of anxiety for extended periods of time.

And most pediatricians have virtually no training in Aspergers so do not expect much, and many will try to minimize your concens due to their lack of knowledge.

bookwormde

 

[C&G'sMama]

KAMKIM - you came to the right place. Definitely talk to your ped and don't take "no" for an answer as far as an evaluation of some kind. You don't have to give me your exact location but you say WNY. If you are anywhere in the Rochester area the Kirch center at Strong is the big place for Spectrum Diagnosis. DS was diagnosed with Asperger's a year ago. A good friend of ours daughter is also an Aspie and we've met a couple of other girls through local groups. I also know of other daughters of friends that have gone to Kirch and been diagnosed with Auditory Processing Disorder. If you're closer to Buffalo, I don't know but I'm sure children's hospital there has something.

I realize she hasn't been diagnosed with anything yet but another local resource is UNYFEAT, just google it for the website.

Good Luck and keep us posted.

 

[KAMKIM]

KAMKIM - you came to the right place. Definitely talk to your ped and don't take "no" for an answer as far as an evaluation of some kind. You don't have to give me your exact location but you say WNY. If you are anywhere in the Rochester area the Kirch center at Strong is the big place for Spectrum Diagnosis. DS was diagnosed with Asperger's a year ago. A good friend of ours daughter is also an Aspie and we've met a couple of other girls through local groups. I also know of other daughters of friends that have gone to Kirch and been diagnosed with Auditory Processing Disorder. If you're closer to Buffalo, I don't know but I'm sure children's hospital there has something.

I realize she hasn't been diagnosed with anything yet but another local resource is UNYFEAT, just google it for the website.

Good Luck and keep us posted.

I will keep that in mind - we are about an hour away from Rochester, not far at all. I left a message with our nurse at the peds office. She asked me to fax over the list I posted here (I did not tell her I posted it online) I just told her I made a list...so she said to fax it over and the doctor would review it tomorrow and call me as soon as he got a chance tomorrow. My girls go to a clinic and the nurse I spoke with told me the one pediatrician is very up to date on this sort of stuff so she made sure he was the one that got my list.

She also said they will probably send her for a psycological evaluation, and we would most likely not need to go to the regular peds office at all. I will post tomorrow once I hear back from the doc.

 

[brergnat]

Sounds like textbook High Functioning Autism to me.

I have a 5 year old son with HFA.

All I can say to you at this point is, your description of your daughter matches that of my son about 95%.

Go with your gut. Don't worry what the outcome is. Get your daughter evaluated a.s.a.p. You will get answers, and the outcome either way will be a HUGE relief to you.

 

[KAMKIM]

We have an appointment for a psych consultation Friday.

It is just for me and DH first - they said to plan to be there for about an hour. I guess we will go from there. I'm glad they were able to get us in so soon.

When I spoke to the pediatrician yesterday and he agreed inattentive ADHD, part of me was relieved, part of me was mad, and part of me was sad.

I feel like if it was just shyness she would grow out of it. Now it's obvious that is not that the case. I'm relieved because now I will be able to find out how to help her.

I'm mad because no one in my family understands or believes in the Autism ADHD topics. I feel very alone in all of this - but I am not my concern right now. I know I have to just grab the bull by the horns and do what is best for her regardless of anyone elses feelings.

 

[GraceLuvsWDW]

Just be prepared. Eventhough Autism is on the rise and is more understood than it used to be, it just isn't understood as well as it needs to be. Be careful of your expectations in "getting a diagnosis". Just getting a diagnosis can bring more issues for you emotionally, etc. Also, the dx does not give you a road map of where to go from here. It gives you a better understanding of your dd's issues, yes, but by no means will it "solve all your problems and answer all your questions". I tell you this with all due sympathy and empathy for where you are on the road to understanding. Just be sure to keep in mind that you know your dd best and the drs, while they may have a lot of letters after their name and think they know best, only you, with their guidance can make the accurate conclusions and decisions about what to do with that info. And sometimes those conclusions and what you do with them change over time.

I'm glad you and your husband are ready to look a little deeper at what might be affecting your dd, just be careful who you listen to, never take any of it as "written in stone" and use your motherly instinct to guide you. Oh, and also, educate yourself by reading all you can.

 

[MickQuinn]

What you described in your post sounds exactly like a student I taught a few years ago. She had a diagnosis of Asperger's, was very bright and had an amazing memory (she could quote entire movies). Interestingly, the headache issue was also the same as you described. During really bad headaches she would even have me check her head because you could feel a "ridge" on her head just above the ears.

My advice, push the school to do an evaluation. Educate yourself on the IDEA regulations so if someone at the school says no, you will be able to inform them that it is required. Educators are definitely becoming overwhelmed by a huge upswinging in autism-spectrum disorders, however, it shouldn't mean that your child should not receive support and assistance. Be reasonable and realistic.

Good luck and God Bless.

 

[rastika]

Wow, This sounds so much like myself growing up! I always preferred adults to kids my age. I've never been diagnosed with anything other than "gifted" but those programs never offered me much growing up, other than an escape from teachers or peers i didn't likel. I was allowed to leave classes that didn't interest me and go read in the gifted room without interruption.

I had the same imagination, including my imaginary friend Shaggy from Scooby doo! I made "careless" math mistakes, and had terrible handwriting. My second grade teacher was a constant battle! She would make me re-write everything until my mom got a letter from a pediatrician telling her that "my brain worked faster than my hands" and to just let it go, that I would always have terrible handwriting (and I do!)

I have always been "sensitive and emotional" and while some see this as a negative, I feel like it's been a great service to me. I'm able to easily connect with people now (it helps that I'm an adult) because I'm empathetic and a good listener. It seems like ASD would be a good diagnosis for me, I feel like I fit Bookwormed's definition of an adapter.

The really good news for you OP is that I've adjusted just fine with practically no outside help, and think of how well your daughter will do with extra guidance and support from you and other caregiver/ educators!

I say go with your gut, and while it feels abnormal to you, I can say for sure that it feels completely normal to your daughter and she's likely wondering why kids her age aren't up to her speed!

Good luck!

 

[Wee Annie]

I just want to say that your description of your daughter sounds almost exactly like my DD9! When you asked if anyone knew a child like this, I answered to myself, "Yes!" Even down to the complete obsession with Scooby Doo everything and details (which my 3 year old is now mimicking...).

I had my daughter evaluated by her school when she was 6, and they essentially concluded that, although she may have some disorders going on (and, specifically, she has apraxia), she was able to "compensate" (their word) for them so well that she didn't qualify for services through the school. In other words, as I told my husband, "the bad news is, she doesn't qualify for assistance; the good news is, it's because she's too smart." She is in gifted programs and is still bored in school. Cannot sit still for long (jumps around, jiggles leg, etc) although gets lost in books to the exclusion of everything else, has great difficulty forming relationships with most her peers (seen as "odd," a "character"), but much better with adults, etc. And don't get me started on the food and texture issues! She's very emotional, overly sensitive, and sometimes has difficulty handling her emotions (prone to outbursts when very angry or sad), yet is considered by all a very nice, reasonably well-behaved child.

So yes, there are others of us out there with "odd" children who, like you, have wondered for years whether there is something we should be doing for them. And I still wonder. So please keep us apprised of what happens with your daugher, as I, for one, am pondering these same issues. My niece has diagnosed Aspergers, and is quite a brilliant writer, and is very interesting to talk to. And is somewhat like my daughter (and possibly yours), although my daughter is better able to "adapt" to normal daily interactions.

Good luck! Your daughter does sound special (meant in the best way possible!).

Ann

 

[bookwormde]

Maybe we need to add Scooby Doo to the diagnostic criteria for females on the spectrum, I have an aspie niece who is a double major (technical areas) in college and she is still a big Scooby fan. She is not the “laid back” type though (still more than happy to tell people they are “stupid”). I guess learning not to use the “S” word comes with maturity.

bookwormde

 

[Schmeck]

What would be your goal after diagnosis? You have described my oldest daughter - we had no need for a diagnosis as she was able to adapt to situations with guidance from her teacher and parents, she excelled in academics, and graduated valedictorian of her class, and is now a freshman at MIT.

If you want my copy of Attwood's, and don't mind the crossed out parts where he made incorrect generalizations and assumptions, you're welcome to have it.

 

[Wee Annie]

What would be your goal after diagnosis? You have described my oldest daughter - we had no need for a diagnosis as she was able to adapt to situations with guidance from her teacher and parents, she excelled in academics, and graduated valedictorian of her class, and is now a freshman at MIT.

This is a good point I think you need to consider as you go forward on this. This is why I have not pursued, beyond personal counseling, anything for my DD9. I'm not sure what other interventions she really needs. She's just an odd kid -- seriously -- that has difficulty making friends and interacting with her peer group. She is effortlessly top of her class, so no need for assistance there. And her teachers mainly say she holds it together well in school (some daydreaming, lost in book, etc, but much better than the behavioral probs of the some of the kids in the class). My main concern with her is her loneliness with her peers, and helping her in this regard. But she will never be a child with "lots" of friends. And she has found one or two (also a little odd, I must say, but so nice) that she can talk with.

Counseling is good, I think. And can help address sleeping issues (she has trouble sleeping), the inability at times to control her emotions (frequent crying, etc) and feelings of loneliness, like she doesn't fit in, etc.

So I guess you should really begin to ponder what you want to get out of a diagnosis. Not saying it isn't the right way to go, but start putting some thought into what you want to do with it. For us, I actually have found it helpful that my niece is diagnosed Aspergers, as I can compare my child with her. My niece, as mentioned, is less able to "compensate," and her parents had to pull her out of public school and put her in a small, Quaker private school. But my daughter just seems able to adapt so well that we haven't pursued anything.

But I know what you mean. What I would give for a teacher to complain that my daughter was talking to others in class!

Good luck, but Schmeck made a good point -- consider it.

Ann

 

[melisandes]

Get the school to evaluate her for Autism. That way it is free. If you are seeing odd behaviors chances are the teacher and bus driver are too.

 

[jodifla]

Get the school to evaluate her for Autism. That way it is free. If you are seeing odd behaviors chances are the teacher and bus driver are too.

The schools are the LAST people I'd go to for any diagnosis that needed a sophisticated, detailed eye with accountability and a track record for being RIGHT. That you need a PROVEN specialist for. You can spend a lot of time and money chasing around "professionals" who don't have a clue as to what they are doing. The recent poll where 40 percent of parents who were told their children were autistic and now say their children don't have it anymore shows how many wrong Dxes are out there.

OP, I'd read up books like The Out of Sync Child, The Child with Special Needs, Quirky Kids and The Mislabled Child. You know your child best, and it helps for you to get a good educational grounding in what you think her issues are. Trust me, you will QUICKLY be more informed that 9/10ths of the school districts out there.

Then I'd find THE BEST specialist you can in that area that can see her. I had to travel halfway across the country to get a clear picture of what was going on with my son and his language issues. But it was SO worth it. Everyone else was a rank amateur compared with the university teaching hospital I ended up at.

Good luck to you!

 

[bookwormde]

It is always important to remember that schools do educational classifications; clinicians do diagnosis, while if well done they have many parallels, but a developmental neurologist or a grouping of clinicians, which are highly experience with all area of autism genetics, is whom you want for a diagnosis.

bookwormde