how important is a diagnosis

[clori]

I've posted before about dd9. We had one 3 hour assessment done at a local hospital. Basically when I finally got the report it says that dd has anxiety. It also says that things like ocd and asperger's are non conclusive needing further study. The school did an initial iep assessment. The school psychologist believes there is anxiety. The school social worker has been saying anxiety and ocd since dd started seeing her last year (though there has never been ocd as in checking). The OT found that there is auditory and tactile hypersensitivity. Sincethere are no academic issues dd doesn't have a state defined disability so doesn't qualify for an iep.

Basically school is going much much much better this year than last year. One thing that probably helps is this teacher doesn't get frustrated with dd on a daily basis and also doesn't think sending her out of the classroom is helpful for dd socially. Sad to say this but compared to another girl is this years class who seems to have serious issues dd is probably much better perceived by her classmates this year. DD has been in a social skills lunch bunch group this year with the school social worker but otherwise gets no special things at school. She had some ot initially but it was related to her broken arm.

Basically dd mostly seems like a totally normal child but you never know when she will go off screaming when things aren't the "right way". She hates loud noises, seems on socks etc. She is petrified on going into the bathroom at home if the light isn't already turned on and it is dark. She doesn't sleep thru the night so wakes me every night to turn the bathroom light on for her plus I have to tuck her back into bed and turn on her music yet she sleeps with noise reducing headphones (from home depot). If she hears dh snoring she goes crazy.

She recently started seeing a therapist (lisw) who has reviewed all the info and done some observation etc. She feels that dd is on the Aspberger's spectrum but wants us to take dd somewhere else for hopefully a more defininate diagnosis. I guess what I would love is strategies for helping dd work thru her issues especially frustrations. I'm also not sure if officially labeling dd in school can be harmful long term since she is okay academically. I think if dd has an obvious issue I wouldn't hesitate to address it but whatever she has is fairly subtle. Other times dd goes around singing Hannah Montana songs, talking about American Girl dolls etc.

 

[bookwormde]

Clori,

Wecome,

A diagnosis can make it lot easier to get and educational classification. Beyond that it is mostly good insurance purposes. It sounds like you already know that she high functioning on the autism spectrum (an aspie). Since she is suffering from anxiety and some OCD there is clearly work to be done, as children who are self-aware and in an Aspergers supportive environment typically have anxiety well below clinical level and should never be clinically anywhere near OCD.

Most hospitals and clinicians are not competent to diagnose Aspergers, especially in girls. You need to find one, which has a special group for Autism and is highly experience with Aspergers and is maintain current training. This can take some research and persistence and often a 6 month wait for an appointment. You might want to check with Yale’s autism/Aseprgers group to see if they have any recommendations. One thing to check is to see if they did an auditory processing evaluation (this has nothing to do with her ability to hear) if not you can pretty much guess that they did not have a clue about Aspergers, if they did it should have come with concrete recommendations for the school

Oh by the way the state does not define a disability in the educational setting the federal IDEA regulations do, and for Aspergers it is very common for it to have very little to do with academic performance, but instead is social/TOM, Executive function and sensory issues.

One of the best things you can do is to start educating yourself, even if she never meets the clinical definition of Aspergers she still has the challenges and gifts that come along with the spectrum genetics and understanding those is essential. Tony Attwood (the leading clinician in the world on HFA and Aspergers) has by far the best first read, it is titled “The Complete Guide to Aseprgers”c/2007 and is available on Amazon for $17.

Your daughter is lucky to have a teacher who instinctually “gets it” but it is very unlikely in future years that that will be the case.

If you have any other question please feel free to ask, there are lots of parents on this board with a great amount of experience in all areas of the Autism spectum.

bookwormde

 

[disneymom3]

Many of the things you mention sound very much like my son. He has been diagnosed as much as one can be until the new DSM comes out, with sensory integration disorder. He was administered the Sensory Integration Praxis Test by an OT certified in administering it.

He is homeschooled but would not qualify for an IEP because he has no academic issues. Our local elementary school actually said he tested as normal or typical or whatever on the tests they did for OT and PT as well. (A third grader who CANNOT tie his shoes or hold a pencil or write his name correctly is NOT typical but whatever...) We work with a private OT--the one who gave hte diagnosis--and she has been amazing at providing suggestions of how to work better with him and strategies for dealing with frustrations. (She also figured out that the reason he couldn't write was because he didn't want ot touch the paper and was holding his arm up in the air. We started doing his written work on a dry erase board and voila! Lots better now!)

For me, I think a label helps ME to understand better. Actually, upon the advice of our pediatrician, when we go into new situations, like a dr he doesn't know or things like that, we just say he is on the Autism spectrum. (She is still not convinced that there is nothing else going on there and she may be right.) So, for that a label helps too.

I really really hope you get the help both of you need!

 

[Kat77]

I struggled with getting dx's for my children and "labelling' them in the educational system (we had private medical evals). Esp. w/ DD11 who has tourettes and NEVER wants this to be discussed with outsiders... When you have a kid with issues that could go (under radar) without an official dx you question what good it will do for the child...vs. ostrasizing them, or even questioning if you are wrong about the issue to begin with -maybe those melt downs are poor parenting, maybe if I forced them to keep socks on as babies they would not have issues with them now? My aspies could just be high strung nt's and everything due to my parenting.... They are brilliant kiddos, they have no problem understanding the classwork, so why bother?!
Because we never know from year to year what the situation will be in the newest classroom or on the newest medications, we have dx's and iep's for educational purposes now. I do not want my child punished for falling asleep in class - when it is a medication issue! I do not want timers put on my high strung aspie who can not deal and will freak out! There is so much more to having an IEP than just modifying classwork....

My struggle is how important is it to dx co-morbids? Do we really need to list everything out in an alphbet soup, when they are known to be associated with whatever their main Dx is? Ugh!!!!

 

[Kellea]

I would ask to have her evaluated for Sensory Integration Disorder. She sounds exactly like my DS7. I struggled with getting the diagnosis too but I have found that those are the only thing that would help him to get the IEP services he needed. He has a very high IQ but qualified on the basis of Written Expression. Basically what this means is he is super smart but can't seem to get it from his brain onto the paper. He has several diagnosis' such as CP, Sensory Integration Disorder, Apraxia and febrile epilepsy. His dad freaked out about him being "labeled" but the only way to get the help he needed was the label so I'm thankful that I did it.