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Benefits of an Aspergers diagnosis?

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cmego posted 12/14/2013 21:46 PM

Wise SI knows all!

My 10 year old dd is a brilliant kid with a current dx of ADHD combined/OCD/sensory seeking. She is on a med combo of Strattera, Zoloft and something else I can't remember to up her eating since she has not put on weight in 6 months.

Every psychologist who works with her says she has Aspergers. But, tested twice (with independent therapist) and she doesn't "test" as an Aspie. Well, I switched her to a CBT who specializes in OCD/ADHD/ Spectrum about 2 months ago, and she pulled me into the appointment last week and said, "I really believe dd has Aspergers and I want to test her." I explained that I've tried before and couldn't get the dx. She said, "It presents differently in girls than boys, I think we can get the dx."

My ex is not happy with having dd "labeled" with Aspie as dd is so bright, she is making straight A's without hardly opening a book. We have always been told that her high intelligence masks one of the hallmarks of Aspie/Autism, which are poor grades in school. We do not have an IEP because her grades are perfect and her behavior on the drug cocktail is within normal limits.

It was a long 3 year battle to get her to this point. 3rd grade was horrible because she was in a gifted class, but the teacher expected perfect behavior and was punishing dd's wiggly, active behavior. It was the only time in my life I actually yelled at a teacher and principal. They pulled her out of gifted classes, and placed her with teachers who can tolerate her behavior and it has gone much better.

So….middle school starts next year. What would be the benefit of having an Aspie dx at this point?

The schools don't seem to care since her grades are good. She is beginning to have more social issues (few girl friends), and noticing boys (!!!), but most don't really notice that dd is anything but a little "quirky". She is a cute girl, and I make sure she dresses "in style" and thankfully she hasn't been teased yet…but that might change in middle school since socially she is awkward.

Thoughts, anyone?

Lionne posted 12/14/2013 22:44 PM

Retired teacher here. Both my husband and one son were dxed as high functioning aspergers. My personal opinion is that these quirky people are just that, quirky and interesting, and it's up to schools adapt to them.
The reality is different of course. Not all teachers will appreciate her special attributes and contributions. Kids are unkind and must be taught tolerance.
I understand the reluctance to label, but think of it instead as a description. One that will open doors to services that she very well may need. Extra counseling when she navigates college interviews, peer to peer interactive coaching, a 504 plan that will allow close monitoring as her medication needs change and will level the playing field for her.
It's not a label to hold her back, it's a descriptor to guide her to achieve her greatest potential.
And it sounds like she is off to a great start!

[This message edited by scaredyKat at 10:44 PM, December 14th (Saturday)]

StrongerOne posted 12/15/2013 00:27 AM

If your child needs services or accommodation due to her dx, it doesn't matter if she earns A+++ and has an IQ of 200. Grades do not determine a student's right to services or accommodation. Do NOT let anyone at any school tell you this. It's a load of horseshit. They are legally obligated under federal law. She may need occupational therapy for instance. Talk to the psychologist about this, for starters.

BTDT. My kid is tremendously smart and earns superior grades. He has a 504 (needs accommodation for his disability). Every time he moves up a grade I have to go thru the same thing -- no one thinks they really need to accommodate him since he earns good grades regardless. Not the point.

cmego posted 12/15/2013 07:37 AM

I am not the one that is worried about what a "label" will do for her, but ex doesn't want the label. Those are his own issues..but what I do need to do is try to prove to him that having the dx WILL benefit her.

The school puts minor accommodations into place without a 504/IEP/They've recently changed the term here. She has a movement ball and she does all of the "running around" for the teacher to allow movement. They keep telling me they will do these things without a 504, so what is the point?

I do believe she needs occupational therapy, but I've been handling it outside of the classroom since I am so tired of dealing with the school. The same thing, I have to fight each year with the school. Her third grade teacher told me point blank, "Your biggest problem is that she is too smart." She then had to retract that statement in front of the principal. The school knows I am not happy, but I feel like my hands are tied because overall…she is doing well. Her grades are good, she is in chorus, she has few behavior problems, she has a few friends…but the friends are boys. She can't relate to other girls.

I did send the guidance counselor the question, "What kind of changes can I expect with a dx of Aspergers?" She hasn't responded yet (gee…what a surprise!).

StrongerOne..what kind of accommodations are they doing if his grades are holding?

roughroadahead posted 12/15/2013 08:00 AM

First off, aspergers is not a diagnosis any longer. When DSM5 came out in May-ish, aspergers/autistic disorder/PDD-NOS were replaced with autism spectrum disorder. What testing were they using? Mine were all dx pre-DSM5, with two days of testing each, and I have one autistic disorder and two PDD-NOS. High grades are really common in aspergers, especially before middle school.

In most cases, it won't help you get services in school. Schools do not care (and nor does the law require them to) what any medical diagnosis is. They care about whether there are any effects on the child's education. That's where the grade thing comes from, although that isn't the whole story. It sounds like she's getting sensory accommodations, what about social skills? Has she had an eval for that? OT needs its own eval too, a dx of asd won't automatically qualify her for that. You won't get OT for sensory at school, only fine motor. Sometimes the OT consult for sensory issues, though.

It is a complicated set of circumstances to deal with for sure. For everyone's protection, do get a 504 anyway.

PurpleBirch posted 12/15/2013 08:53 AM

I'm a teacher as well. I think having the dx would be beneficial since as the other people mentioned, she could then take advantage of further services. At one of my previous schools, there was a social skills class. If they have something like this where you are, your DD could probably benefit from it.

I don't know if putting it this way would help your ex at all, but wouldn't it be better to have the dx and get the services than to be an aspie without the dx and not have access to the services?

I'm frankly a bit surprised that your school is being a pain about this. In my experience with some parents, we have to beg them to do testing. I mean, I accommodate a lot, even if there is no official diagnosis/IEP, but having it all on paper helps not only the child but myself as well.

Ps: I don't mean that I don't believe you about your school. I am just surprised at them.

devistatedmom posted 12/15/2013 17:49 PM

Developmental Service Worker here who works in the high schools, but in Canada.

It sounds like your daughter is doing great right now even without the DX. Great. I'm not sure how old she is, but I'd look at it this way. Yes, she's doing great now. Academically, she may always be fine, but if you are noticing social issues now, imagine what they may be by the time she's entering high school. Of course, at that point, she may also start to notice she doesn't "quite fit in" and may also start having behaviours she doesn't have now.

It's always easier if you have that paperwork in place now. Right now, maybe she doesn't need many accommodations. 3 years from now, you may be thrilled she has the paperwork there, because it will stop ugly fights with the school if she does need accommodations at that point. Trying to get it recognized at that point will cause delays that may be troublesome for your DD.

Hope that makes sense.

cmego posted 12/15/2013 21:18 PM

Yes, this IC told me the Aspie dx is no longer "valid", and the criteria have changed. So, she is somewhere "on the spectrum".

There are no social skills classes at the school. The school is not concerned about OT, so I don't know how to get the school involved. The school has been very clear that their main focus is grades. Let me preface that by saying I am in one of the top, highest achieving public school districts in the country. Our school has tested so high in standardized testing, we can "opt out" for the next few years. This is a wealthy school district with very involved parents…which may be back firing on me at this point.

I think the social issues will become more of a problem. At this point (she is 10), she doesn't care yet. Or, tells me she doesn't care. She isn't bullied, she just doesn't seem to "hang out" with other girls unless they are younger.

Ex doesn't want her "labeled". I need to find out why.

roughroadahead posted 12/15/2013 21:28 PM

Darn it, I had a whole long post that disappeared with a faulty internet connection.

Upshot: oh yes they do have social skills. That's not an option. Ask for a speech/language evaluation focusing on "pragmatic language".

Also consider whether having a dx will actually help your daughter. She can make the difficulties she knows she has almost like a study topic, which may be comforting. It may help her understand herself better. There are also a ton of books out there for Aspergirls. I think Tony Attwood wrote a good one, and there is also one actually called "aspergirls"

tushnurse posted 12/16/2013 08:57 AM

I have a kiddo who was Dx ADHD and is also brilliant, and he has always walked the Aspie fine line.

He didn't have to open a book to study until his sophmore year of High school. He is now a Jr, I would strongly recommend having an IEP in place for any kid that walks that line, and the reason I say that is his grades have been bad because he often doesn't get the need to do the work, or show the work to get his answers in things like Precalc, and Chemistry. His head does it all and he writes down the answer, and the teachers want more, they "have to be sure he isn't cheating" and "really understands what he is doing" He doesn't have an IEP in place, and I think it's hurt him a bit, because he hasn't gotten some of the exta attention he would have benefited from.

He will be fine at the end of the day, and so will your Daughter, and as long as her teachers are willing to work with you, and her and keep communication lines open you should be fine. The problem I have found in High School is the teachers are burnt out, and are not held accountable in a way, so it's all on me to keep annoying them to make sure DS is on track.

(((and strength)))

itainteasy posted 12/16/2013 09:46 AM

If your ex doesn't want her "labeled" that's his problem. It sounds like he thinks her "label" will reflect upon HIM. Like he will be some how be "less" for producing a child that is *GASP* on the spectrum!!! And if that's the case, that's his fucking issue to work out, not yours or your sweet girl's.

cocoabean posted 12/16/2013 10:01 AM

As a parent of ADHD sons, I heard other parents say they did not want their children "labeled" as ADHD so they did not have them tested, put on medication, etc.

What happened is that when these other children started really struggling in school (either socially or academically) they were "labeled" - the "dumb" kid, the "weird" kid, etc. Not right but labels will be attached with or without a diagnosis.

Better to have the "label" and be able to get the help that is needed (as my sons did) than to not get the help needed and still be struggling. I have seen that with the children of friends who refused to have their children evaluated (they are now 20-somethings and life is not easy).

Perhaps you can explain to ex that there will be a label attached to her and one can be a positive thing and one will be a negative thing.

Good luck!!!

cmego posted 12/16/2013 10:13 AM

Yes, I need to talk to the school some more, and the IC some more too.

She has plenty of labels all ready, and ex fought me the entire way. Mostly because I think he is all of these things too and *gasp* he is JUST FINE!

I'm doing a great job of allowing her interest to be paramount, which are animals, and she tells everyone she is going to be a marine biologist. So, we discuss the importance of grades.

As you all know, it is difficult to explain the need to study to a child that doesn't need to. As long as she listens, she understands. Her 3rd grade teacher kept saying, "She doesn't appear to be listening!!!!!" Well, no DUH! She just doesn't want to look at you.

She is just on the Aspie/whatever line with the other issues helped by medication, so she doesn't appear to NEED help. It is the unknown problems that are ahead of us that are worrisome.

rainagain posted 12/16/2013 21:31 PM

I'm a teacher too, and getting a 504 or an IEP will ensure that she gets the support she may need. Entering middle school is a really big time of change.

Look at it this way: you want all of those adults who are in charge of her academic, social and emotional growth to be as informed and prepared as they an best be to care for her while she's at school.

I think your ex may need to do some thinking about "labels".

It sounds like your dd is doing just great!

caregiver9000 posted 12/16/2013 22:13 PM

My bf has an aspie boy 7th grade. He was misdiagnosed in elementary school as ADHD. He is brilliant. But he doesn't read social cues. His quirks caused him problems as school groups became more social. This child's quirks led him to be too physical in his enthusiasm with his friends. OT has been great!!! He is actively being told what body language and personal space is.

I support having a safety net in place for a child who MAY encounter difficulties at some point. Compensating at 10 is very different than compensating in adolescence.

Sounds like you are asking the right questions and advocating for your child.

BTW, your lead in sounds like you are coming to the oracle...

Lionne posted 12/16/2013 22:17 PM

In our elementary school we did a great job of accommodating all our kids, they didn't need any labels. We just took them as the individuals they are, the teachers, counselors, parents and the assistants would work together to insure that the kids got the support and adaptations they needed.

Things changed when they got to the middle school and were worse at the high school. Whether it was a difference in philosophy, the larger size of the school overall, or who knows what, kids are expected to sink or swim in some instances. And some, rather spectacularly, sink.

We don't want that to happen to her. A 504 plan and some extra expectations placed on the SCHOOL are appropriate.

Makes me mad when the KID is expected to change to accommodate the TEACHER!!!!

StrongerOne posted 12/17/2013 08:58 AM

What everyone else said...

It's nice that the school is addressing SOME of your daughter's needs. There is no guarantee that they will continue to do so. All sorts of things can happen: new principal, new coordinator of services at the school, a teacher who is a cretin and doesn't want to make a "special effort" because there's no paperwork requiring it, DD needs different services/accommodations, or svc/accom that's expensive, or hard to get.

Trust me, you want that pwperwork in place NOW, at an elementary school where they are apparently caring and interested in your daughter's learning. You do NOT want to be starting it new in middle school, where the school work is harder and the academic and social expectations are higher. You want to go into the middle school with your paperwork already in place, so that you are then meeting with the staff to review the paperwork and update it for new needs, rather than fighting to get it in place.

Your elementary school does not get to tell you no without a review. You can request it. Especially if you have documentation regarding services and accommodations that your daughter needs.

Be nice, but be firm.

I will also say that you should involve your daughter to some extent. The more she learns how to ask for what she needs, the better. Each level of schooling will require more independence and self-reliance from her. When she gets to college (where I work), she will have to register for and request accommodation on her own and follow through with instructors. So starting now in a small way is important.

As for your ex, arrrggh!!! Can't help you there -- I'd advise whacking him upside the head, but that would be a bad example for your DD, so I guess don't do that.

oops, just noticed your question to me: My DS has a visual disability and a brain tumor. Accommodations at this point are for seating, making sure that materials meet certain standards of legibility, etc. When he was in elementary school he also needed services to learn how to use readers, magnifiers, and computer software, and he needed to learn how to navigate a crowded hallway, that kind of thing. He's learned all of that so does not need the services. Even so, I have to train teachers every the 504 wording...make sure the middle school is not taking the easy way out to accommodate him (they wouldn't give him art classes because they thought it would be hard for him to see what he was doing, they wouldn't give him p.e. classes because they didn't want to restructure activities so he wouldn't get get the idea!)

cmego posted 12/17/2013 09:46 AM

I've got an email in to the school guidance counselor. I think for me, the fear is the unknown future. She is good NOW, and it has taken 3 years to get there. Medications were a life saver for her.

The school seems…apathetic.

dazdandconfuzed posted 12/17/2013 12:04 PM

I have an Aspie in the 8th grade. The school is very apathetic because his grades are pretty good. He is also getting better at "faking" the social cues, but he says it is literally exhausting for him and sometimes he spends half his day just trying to keep himself from saying anything stupid because he often doesn't understand what his peers are saying to him. Interestingly enough, he seems to communicate better with girls than he does with other boys.

What I think has been helpful with him, having a diagnosis, is HE understands why he is the way he is. He hates having Asperger's, and he rails against it sometimes. I think it would be harder though, understanding you are different then other kids your age, but having no idea why. IMHO.

dazdandconfuzed posted 12/17/2013 12:08 PM

Oh - and another thing. It has been our experience, at least in our school system, that teachers DO NOT like it when your kid doesn't LOOK like they are listening. My kid got all As and Bs, but his teachers say they can't recommend him for the honors programs in HS because he "doesn't pay attention". They tell me he doesn't work to his best potential, doesn't always do his homework, and doesn't pay attention - but he gets As. Tell me how that is possible if he isn't paying attention?

Explaining Asperger's to teachers doesn't always work - but at least you can try to get across just because they are staring out a window, doesn't mean they aren't paying attention. They just don't understand why in the world you care if they LOOK like they are paying attention.

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