Gifted Issues Discussion homepage Forums Twice Exceptional Pros and Cons of Asperger's label

Ds may have Asperger's or he may be quirky. (Does math count as an obsession?) Finances don't allow me to pay for private testing, but I might be able to get it through the school. Can I trust them to do a good job with a highly gifted child?

Please add to my list of pros and cons for getting an Asperger's label (real or not).

Pro: protection (maybe)from the worst disciplinary action if he does something outrageous

Pro: a shortcut way to explain quirks to teachers

Con: do we really need another label? we already have dyslexia, adhd

Pro: if he needed it, he could (maybe) more easily get speech therapy, OT, PT

Con: What if he's misdiagnosed?

Thanks.

Yes. Some gifted kids with AS seem to fasten onto academic special interests. Mine sure did.


School personnel are not qualified to diagnose disorders, and they're unlikely to have the expertise to sort it out on their own. Ours definitely benefited from outside guidance.

Try your health insurance (often they will pay for a neuropsych eval if there is a suspected disability, where they would not pay for simple IQ/achievement testing). This may depend on what code your doctor writes on the order. In our county there is also public funding available for diagnostic testing. Find the right doctor to see, and then ask their office to help you figure out how to pay for it: they help people with this all the time.

That said, you do need to request an evaluation from school (parallel to pursuing the eval outside school) because they have to do their own educational assessment prior to qualifying him for services. If you think he needs speech, OT, PT, then he needs an IEP, and the school has to evaluate him even if you have private eval results to hand them.


There are pros to having the diagnosis only if it's accurate. Assuming he does have AS, it should be very useful to have a correct diagnosis.


Does he often do outrageous things? But yes, if it's provably a result of his disability, there is some limited legal protection. (Look at the wrightslaw website, search "manifestation determination" in their site search box.)


This helps some, although each kid with AS has his own individual issues to explain. We do prefer the label "AS" to "badly behaved child," for sure.


You need to know what's going on, in detail, because the recommended treatments for dyslexia and ADHD are very different from those for AS. You'd choose very different therapies. The school would choose very different strategies for teaching him and managing any interesting behavior that arises. It's not the label that matters, but the correct understanding of the problems leads to the ability to solve them. And choosing the right practitioners who will get you there.


Likely. Even if these things are not easily available at school, a good eval would tell you what he needs and help you start getting it.


Well, if you think you don't have the whole picture covered with the diagnoses you have, he might be misdiagnosed (underdiagnosed) now. Not saying he is, but saying he might be. If you're doubtful, it seems like a good idea to investigate.

If you choose a diagnosing doc (preferably neuropsych, ours works in tandem with a developmental pediatrician) who sees lots and lots of kids with AS, they will have it quite clear in their mind what to look for, and be able to make fine distinctions that lay people can't. This makes misdiagnosis less likely.

Biggest Pro: you don't say how old he is or whether he's frustrated with his own behavior. We found that knowing about his AS helped our DS enormously. Thanks to a teacher who really didn't get it, he had been made to feel that he was a bad child-- a child who simply could not do things right that everyone else does effortlessly. Having a name for his differences, and understanding that it's the way he's made, not his fault, was very important for his development-- he likes himself, he knows and accepts that he's different. He'll spend a lot of time coming to terms with it all over time, but at least he isn't blaming himself or feeling totally rotten any more. Knowledge really is power.

DeeDee

Our school system has a neuropsych on staff, or at least 1 they contract with; however, I can't find one associated with the closest children's hospital. Our pediatrician's office gave me the name of a developmental pediatrician, but they didn't know anything about neuropsychology (I spoke with one of the office workers or maybe a nurse.)

I think ds (he's 10) will do fine as an adult. In some ways he's immature, posibly due to ADHD. He's not as worldly as some of the kids at school. We don't allow him to watch movies or play video games with mature themes, and he doesn't really read much fiction. On the other hand, he spends a lot of time trying to figure out people's motivation for their actions. He's not one to get in trouble, but he gets frustrated when people don't take him seriously.

I'm worried that middle school may be difficult next year because they draw from a much bigger area than our elementary school. I don't know what kind of outrageous things he might do, but it would probably involve talking too much.

I guess I worry about misdiagnosis because our other ds has just been accurately diagnosed with a medical condition that was misdiagnosed several times over the course of many years. He has some permanent damage because he wasn't treated for the right condition, and we don't know the results of all the medication he took over the years.

I agree with everything DeeDee said, and will add that if you feel that, once your son had been evaluated by the school, the school has not done a good evaluation, or if you disagree with their findings, you can request an IEE at public expense from the qualified professional of your choosing to get one that is more accurate

There is no substitute for knowing what is really going on to help you take the right actions to make things better.

If you are worried enough about your child's "quirks" getting him in trouble in middle school to contemplate welcoming an AS diagnosis because it would offer some protection for him, then he's probably not just a little quirky, he's probably a lot quirky (even though the rest of the family may be quirky, too, which can skew your perceptions), and I'd venture that you are not in any way out of line to pursue an evaluation to rule AS (or some other disability that might be responsible for the "quirks") in or out.

Do they have an autism center at the children's hospital? They should have appropriate diagnostic people on staff.

It's also fine to start the process with the school's neuropsych. (That's rare; our schools tend to have M.A. psychologists who just do basic testing.)


Is that because it's not apparent to him why other people do what they do?


That is so frustrating. And it would definitely color your opinion of the medical profession, wouldn't it.

In the case of adding an AS diagnosis (if that's appropriate) to an existing ADHD diagnosis, I think your experience would be different. You might or might not be adding new meds (depends on whether your DS is suffering from anxiety with the AS)-- but you wouldn't have to if you didn't want to. And I think you'd get a sense from the diagnosing doc of why they are deciding what they are-- so it would make sense to you. (If it doesn't make sense, ask more questions...)

DeeDee

ETA: List of tests you might expect to contribute to an AS diagnosis:

Stanford Binet 5 (cognitive)
Woodcock Johnson III (academic achievement)
WIAT-II Word Fluency (academic achievement supplement)
Children's Memory Scale (memory)
VMI-V (visual-motor integration)
NEPSY Social Perception (social awareness/understanding)
ADOS (autism diagnostic observation schedule)
Vineland (adaptive behavior - parent report)
PDDBI (ASD characteristics - parent report)
CBCL/TRF (general behavior - parent/teacher report)
PLSI (pragmatic language - teacher report)

He doesn't have the OCD-type, perfectionist tendencies of diagnosed Asperger's kids I know. He likes to know ahead of time if our normal routine is going to change, but he handles change well. He doesn't try to control our family and the way we do things, except for his siblings. I don't really see him as rigid, just different.

He does have sensory problems with noise, he doesn't like to write, and he loves math. He also likes origami, video games, and playing with other kids. He would like to spend more time with other kids, but they don't always seek him out. He has a different sense of humor (he sometimes has a hard time relating to other kids, because he makes jokes they don't understand, and doesn't understand their references to mature-themed movies and TV shows we don't let him watch, and he can be annoyingly persistent about things). He didn't really engage in imaginative play until his little sister showed him how (he was about 4). He doesn't have problems with idioms, and his reading comprehension is very high. He instisted we teach him to read at 3. He's a little immature socially.

We already know he's highly gifted. It's hard to know what's gifted, what's ADHD, and if there's anything else. He's had enough of those tests for us to know about the ADHD and gifted diagnoses.

If you seek further evaluation, you can hand them the previous testing-- having findings in hand may save them some time.

I am not of the school that says "gifted" has to mean "social problems"-- I've known gifted people who are socially apt. To me, if you're wondering about AS, and seeing social problems (trouble connecting with peers, annoying persistence in topics that don't interest others), it seems worth investigating. My impulse is always to know rather than not know.

DeeDee

Disclaimer: I don't have a child with Asperger's, so I'm not an expert. I do have two 2e kiddos though, and one who's been misdiagnosed as ADHD at one point.

My suggestion is, you have questions, so chances are something's up that's more than just giftedness or ADHD, so I would move forward to try to figure out what it is. It might be Asperger's, it might be something else entirely, or maybe it's nothing.


Whether or not you can trust your school to give a good eval is going to depend mostly on your school staff and school district philosophy, but from my perspective the benefit of having the extra data/observation/info on your ds most likely outweighs any concerns, especially if you are in a position where you can't pursue a private eval.




I don't see it as a "do we need another label" - I see it as a label describes a diagnosis describes the behaviors/symptoms/concerns - and that's what you need, a better understanding of the things that are concerns. It's not just you that needs the clarification, and it's not just the teachers who work with your ds, it's your ds who will benefit from having that clarity and understanding.

I also think that there is no short-cut way to explain 2e kids to their teachers - we can try our best to summarize, be brief, be clear, but we are still going to need to be able to explain in detail and be tuned in with what's happening at school to help see problems as they arise and help find ways around challenges, until our kids are mature enough to take over advocating for themselves. We'll be teaching our kids all along the way - teaching them how to stand up for themselves and be their own best advocates.


This varies from school district to school district, but it's definitely true here. However - I think rather than chasing a diagnosis to get services, it's more straightforward to request an eval stating what services you think your ds needs.


If he's misdiagnosed, you'll figure that out over time and you'll seek ways to prove the diagnosis doesn't fit, you'll advocate, share what you know with your ds and with the school and life will go on. Even if it's a correct diagnosis, your ds' needs are going to change over time and no matter what the diagnosis, you are going to be advocating for his needs. The diagnosis just helps understand the context that the needs fit into and how to meet them. If you find along the way the diagnosis is wrong, that's just more info.

In other words, it's all a journey. And a long one at that!

polarbear

Even though teachers are not neuropsychologists, they and the school have an affirmative legal obligation under the IDEA to identify students with differences. Quirky qualifies. The district is legally obligated to conduct an evaluation of your son. The way this happens it that you send an email to your child's teacher and the principal expressing your concern about your son's possible 'learning disabilities' and request a CSE meeting to arrange for an evaluation. (I know - it's totally odd to refer to a highly intelligent student as 'learning disabled,' but that's the prescribed term.) Get a binder and be prepared to print out every communication you have with the school. Tell your pediatrician your concerns and get her - or him - to write a note saying that Aspergers or whatever is suspected. Bring the letter with you to the CSE and make an extra copy for the record. Keep the original in your binder. You will be asking for a neuropsychological and educational evaluation. A good evaluation should include specific recommendations of modifications. If you do not feel that the evaluation is thorough, you can ask for an independent evaluation. You get to select the evaluator from a list maintained by your district and, again, you need not pay anything additional. The reason I have used private pay evaluators is to maintain control and to get the results more speedily. This is an issue of Federal law. Get the eval and take it from there. Parental involvement is legally mandated - which is a positive in some ways and a negative in others. Where are you located?

Just realized that I didn't really answer your question - just provided you with procedural information. How did someone come up with the ADHD label? Has he already been evaluated? If not, then he should be. Other than for classification purposes, the diagnosis, in my view, kind of doesn't matter. What does matter are the problems your son is having. For example, if it is an issue with executive function, then he needs to be taught to manage time, organize and plan, among other things. A neuropsych evaluation can help bolster the argument that he 'can't do those things rather than 'won't,' and executive function problems can occur in both ADHD and Aspergers populations. Same thing with the need for OT and speech - if he needs it, he needs it and if the Aspergers label gets your son what he needs, then take the label and run with it.

My daughter was evaluated twice. Once in middle school and then in high school. She didn't believe that she had disabilities and I didn't really understand the nature of her challenges. I have learned a great deal in these past 5 years and so has my daughter. Perhaps it was because she was a few years older at the time of the second evaluation or perhaps it was her relationship with the evaluator - I suspect the latter, - my daughter gained insight into herself and was better able to listen to the strategies that she was being taught - she came to recognize herself. We never backed down on searching for an education that emphasized her gifts and love of learning. This year, she has progressed for the first time in ages and has had positive experience upon positive experience. Must go remind her to do her laundry!