Maybe you all can help me (re: testing)

[MicheleB]

Both my boys (ages 8 and 9) had their neuropsych. evaluations/testing today.

 

The only things the np told me today was the both boys have similar patterns in what is difficult, what is easy for them (which I kind of knew already); and that my younger son had some trouble with visual-processing and he tested him to see how it relates/affects his motor skills. At least, that's what I think he said.

 

He also gave younger son a test they use for Air Force pilot applicants. ??

 

So... when I go back for the results on Sept. 5, what do I need to do? How should I prepare to have the best possible understanding?

 

Also, *how* are things like mental health diagnoses or autism spectrum disorders diagnosed? I filled out the 400+ questionnaire about my child's behavior, personality, etc. How does that work combined with the testing? I don't know what testing was used today. The np told me he forms a hypothesis based on our initial interview where he met me and both boys. Then he sets up the tests he *thinks* are needed. After the first set of testing, he quickly scores it and sees if he's on the right track with his hypothesis. If not, he shifts things as needed.

 

Any info you can give me would be greatly appreciated!

[JennW in SoCal]

There are folks here on this board who know *much* more than I do, but here's what I understand -- and my oldest son has been through this process about 3 times now.

 

The first part of giving a diagnosis comes from the questionnaire. There is a spectrum of characteristics that are not neurotypical, and a set of those characteristics gets defined as, for instance, "Aspergers" or ADHD. That set of particular characteristics is not set in stone, and there is a lot of overlap between Aspergers, ADHD, OCD and other developmental disorders like Sensory Integration (again, I may be using some terminology loosely and incorrectly). Each of these is defined in a fat book called the DSM-IV (the diagnositc statistical manual or something) so that the diagnoses are given somewhat consistently by different doctors. To get a diagnosis, your child doesn't have to exhibit 100% of the characteristics of a disorder, just a large percentage, and those characteristics have to have been present a long time.

 

The testing is to map out specific patterns in brain function. My ds, for instance, has terrible executive functions, and it was so clear based on the test results where he would be 99th percentile in some things but 5th in a few key areas. These tests are helpful in planning learning remediation, and probably help clarify the diagnosis, but that's as much as I understand about those.

 

The whole process is murky and hard to understand because it isn't like they can do a blood test or CAT scan to screen for a clearly defined problem. All these disorders overlap and mimic one another, and based on MY child, it may seem like certain disorders are more likely at different stages of development.

 

Take notes at your next meeting and just keep asking "but what does THAT mean?" and "What are the implications for school, for socialization, for physical development" and "what do you recommend and why". Call them back with additional questions after you have a chance to digest it all.

 

Does that help or have I made you even more confused?!

[Laurie4b]

I would ask the np to send you a written copy of the report first, so that you can look it over and digest what you can of it. This does two things: 1) though you are expecting some diagnosis or other, there will be an element of shock and grief when you first get it officially. When you're in shock, you can't process info very well. It's nice if you can take the edge off of this at home. 2) Having it ahead of time will help you understand it. You will have time to read and reread it.

 

Write down your questions after reading it and researching it. Then let him give his spiel (Try not to interrupt the flow too much ) and see which of your questions are answered. Both you and dh should go. This will give you a broader perspective, and you won't be the one to have to answer dh's questions when you get home either.

 

Plan with the np for a possible follow-up or phone appt. You'll have more questions as you continue to digest the material.

 

Diagnosis is one part of the reason for an eval, but beyond diagnosis, you want to understand the why's of the various tests. One thing to particularly watch for is wide discrepencies between percentile rankings, or standard scores for various tests. In a neurotypical person, these are pretty flat. Where you see wide discrepencies, then those are areas to be understood and remediated. You probably already understand percentile rankings. Standard scores have an average of 100. Average is 90-110. High average is 111-120. Superior is 121-130. Very superior is over 130. 80-89 is below average. 70-79 is low. 69 and below is in what used to be called mentally retarded range. (I don't know the current lingo for that.) On standard scores, discrepencies of about 15 points or so are very significant. Sometimes a 10 point discrepency can be signficant.

[MicheleB]

Thank you both. It was very helpful.

 

Yes, now that you mention it Laurie, I do remember him saying something about a discrepancy in some area or another.

 

I will see if I can get the report ahead of time, but from what I've gathered I don't think they get it done that far in advance to be able to send it to me.

 

Yes, I think it will be shock and grief, as well as relief to "know" something more. I doubt dh will go with me, but I'll ask. Sometimes it's just better if he doesn't. He tends to "hear" things differently and his interpretation isn't always helpful in dealing with these things realistically. He just doesn't want to see the problems.

 

I dread waiting that long to get the results, esp. since I travel 2 hours to get there. I keep hoping he'll call and say they can have them this week yet and I can just stay here at my parents until then. But that's wishful thinking, I know.

 

*SIGH* You just feel like SO Much hinges on all this, you know?

 

Jenn, you mentioned this is the third time you've done this process. THat's what I was wondering as well. How often do you do this stuff? Is it trial and error and get re-tested and so forth? Or do you hope that a good evaluation will be all you need? Or maybe it just depends?

 

Thanks again. =)

[JennW in SoCal]

I don't think the mulltiple tests are common. We had it done when he was 6 and again at 12 because it seemed we had hit some new wall that couldn't be explained by the orginal diagnosis. It was helpful and we followed through with some educational tutoring to help his specific learning disabilities. The 3rd round of testing was when we started the IEP process through a public charter school through which we homeschool. It wasn't as thorough as the first 2, but they required it because a few years had passed since the 2nd test.

 

I know what you mean about so much hinging upon it. On the one hand you already know about your sons and know there is something going on with them, and the diagnosis comes as a "yep, that's him alright", but on the other hand it makes it soooo real. You start thinking of long term implications and it is all very daunting.

 

I do hope your dh will go with you. Like Laurie said, it is nice to not to have to try and answer the questions you know he will have. And perhaps the np can help him see the reality of the situation.

[MicheleB]

So, then, spectrum disorders, or OCD, or depression, or what-have-you will be dx based upon the questionnaire and family history forms? I'm assuming the testing is pretty much academic?? Or does that cover other things as well?

[sandellie4]

I can't really answer your last questions, but wanted to address the discussion about having testing more than once or twice. With two of our kids, we had them tested when they were younger (one at age 6 and the other at 7). There was no real diagnosis for either of them, though they definitely had discrepancies between sections of the testing. So, when they each hit puberty, we had them tested again, because their issues were much more obvious; behaviors that other children let go of, such as the tantrums of toddlerhood, were still persisting into puberty (except by now we had made connections, such as the girls didn't like change -- meltdown -- and their senses seemed to become overloaded more easily than other kids' -- meltdown). When they were tested at this point, they were on the autism spectrum. We plan to have each of them tested every three to four years, because of the rapid changes in their behavior and adaptation. Each of the tests has been very helpful and I spent most of my time with the neuropsych saying things like, "what does that mean?" and "do you have any suggestions for how to address that?"

 

Hang in there waiting for the results. I hate that part, especially when they don't have it ready by the date they told you! :grouphug:

 

Sandy

[MicheleB]

Thank you Sandy!

 

ITA about "changing". My sister spent some time with my 9yo ds today and she said how much he had changed (and not for the better, she meant). I see the changes as well.... And I believe he *is* entering puberty. It's all very interesting to me (that's a more positive way to put it, isn't it? :D ).