DS (12) is getting neuropsycological examination - what to expect?

[JavaFinch]

I was wondering what to expect, if anyone could just share their experience with an older child doing this?  I'm wondering if I'll be observing or if he'd be alone?  What kinds of tests will they do?  Is this an accurate test to determine if he is on the autism spectrum or has ADHD?

My son has hydrocephalus and is pretty much normal functioning, but he has several traits that have made me think and have made more than a couple friends actually ask if he was autistic.  I have not done testing yet because basically after spending his first 6 years with specialists and feeling it really didn't help or get us anywhere, I stopped it all after he was dismissed from Speech Therapy when he was 6 because we were homeschooling and it was through the school (I felt it wasn't doing anything, which is why I didn't fight this).  I was glad to be free of outsiders and their meetings and shuffling around, which in our case, never seemed to do anything but waste time.  (No offense to others' experiences ... this was just our experience).  I took a pretty relaxed approach to homeschooling the first couple of years, then we started ramping up but we wasted a lot of time on a math curriculum that did NOT work for my son and have since switched twice more and are now using a program that works for him.  His writing skills are behind, as well.

Most things have been a huge struggle academically speaking.  He takes piano, for example, and my husband has to help him with all his practicing, and he struggles with some of the concepts (step up/down) and instead seems to just memorize everything.  We really don't even KNOW how he does it, because he does use the music, but in his own way.

His social skills are not great.  When he was younger, he never played with any children except his two cousins for years and years.  Even after 2 years of preschool and many playgroups and playdates.  I think he was about 7 before he started to play, and even then, he only played if it was something HE was interested in doing, and things like the other kids' names were things he never cared about.  He'd play with a new kid for an hour or something and I'd ask him, "What was his name?" and he'd say he didn't know.  He never asks personal questions of kids.  I notice this contrast a lot when comparing him to my daughter, who will notice someone's eye color right away and ask their name, compliment their outfit, etc., and she's 3!

Just to throw some other things out, he didn't talk until he was almost 3, he's VERY stubborn (he does this martyr thing where if something isn't just so, then he won't have it at ALL), and one thing I've noticed is he gets almost shy using people's names in the first person - even MINE and his dad and sister!  He'll say, "Is dad at work?"  But he won't say, "Hey, Dad, what are you doing?"  He'll just say, "What are you doing?"

Anyway... He's a good kid but I know he at the very least has ADHD.  I am afraid that since we homeschool, any academic issues might be blamed on me and not realized to be a symptom - that's why I'm wondering how they do these tests and how do they tell the difference?  I worry that if the doctor has a bias against homeschooling that he won't get a fair evaluation.

Sorry for the very jumbled post - just throwing some things out and hoping for some responses that are helpful :)

Thanks!

[Emmeline II]

Ds had his at 6yo11mo at a hospital clinic. I know they did the TONI-3, SIT-R, and WIAT II, but tests like these seem to be age dependent so you may have different ones. ADHD/Asperger's/SPD have overlapping symptoms and they can also be co-morbid; the good news is that your ds is old enough to get a more accurate diagnosis. I had wondered if the evaluators would see what I saw but they did; this is all they do so they get quite good at it. At the consult (which lasted 3 hours) the Dr. broke down the results and why they though the results did or didn't support a particular diagnosis.

Ds' appointment was from 9-1.

1.       I did an intake summary for 10-15min. with Dr. in “playroom” for 10-15min. (room with table, bed sized bench, toys and a one-way mirror)

2.       Filled in more surveys (filled out a couple extensive surveys pre-appt) while the Dr. did some sort of table flip chart with ds; then followed the speech evaluator, testing ds in the playroom.

3.       Did history of ds with Dr., from pregnancy to present, in exam room.

4.       Dr. did physical with ds, then health and family history with me in exam room.

5.       Ds went to do psychological and IQ testing in playroom while…

6.       I filled in more surveys with social worker in exam room.

The official schedule was:

09:00-11:00      MD                            Medical/physical

                         MA CCC-SLP            Speech/Language

11:00-1:00       PhD                            Cognitive/achievement

                         LMSW                       Psychosocial/adaptive

There was also a student there observing.

The doctor said that she could see why I was concerned about Asperger's (ds currently has an ADHD/w disturbance of emotion and conduct diagnosis from his psych) but also said that ds was on the borderline (regarding age) for diagnosis. I was so tired after that appointment; Ds' therapy appointments tend to wipe me out too, though I usually only talk briefly with the therapist then sit in the waiting room with dd.

[FarmerBeth]

Yes to everything the previous poster said.  If the screening for your son does indicate that there is anything warranting further inspection into the autistic spectrum, further OT assessments and an ADOS (specific for autism screening) would probably also be ordered.My son is 11 and just had the ADOS done.  I'd say that it still worked out as a diagnostic tool even though he was a little older than the average age for diagnosis.  The picture book he was asked to narrate may have been less engaging than the graphic novels he likes, and the action figure toys were probably a little below age level, but, regardless, a neurotypical kid probably would still have an OK time doing these activities imaginatively if asked.  The questions about emotions were especially appropriate for his age, maybe more so than if he had been younger.

About the homeschooling - I used to homeschool, and the first time we had very thorough testing (he was 6), we had similar concerns about perceptions, and there were some real barriers in the testers weeding out exposure vs abilities.  What helped was bringing some real examples of DS's homeschool work and having the cub scout leader fill out a behavioral assessment as well in place of a teacher (the testers are trying to figure out what their social skills are like in a group of kids and what someone who is not family notices).  If there is any organized activity your son attends, whether church, sports, choir, etc, info from another adult involved can help.  Also, rest assured that only achievement testing would be strongly influenced by how you homeschool.  Cognitive (IQ) testing uses questions that aren't as related to environment or upbringing, so I don't think you'd find any blame, there.  I think he can have a pretty fair evaluation, just be prepared with all your info.

[chiefmir]

Hi- I'm a neuropsychologist, and I can share with you what our evaluation of a 12 year old with your son's history and referral question(s) would be like (of course, it would be slightly different from place to place and doctor to doctor).

For a 12 year old, we'd either see them for one 8 hour(ish) day or two 3-4 hour sessions on different days, depending on their level of functioning and their parent's feelings about how they'd handle such lengthy testing sessions.  Either way, the first hour(ish) would be an interview with the parent(s), most likely without the child in the room.  When possible, we try to slightly stagger our appointments (there are 2-3 of us in the office each day and we each see one patient (at most two if the sessions are half-day) per day, but we try to have one person start the testing while another interviews the parents, just to help make the day go faster and more smoothly.  If the parents bring any past evaluations, relevant medical history (like diagnostic tests, etc) and academic records it is helpful.  The testing is 100% just the child and the doctor, for us.  I've never had a problem with this, even the most shy/nervous/developmentally delayed/etc. child has usually warmed up quickly and we take breaks for them to see their parents/have snack/walk around etc as needed.  The tests include IQ (the WISC-IV at your child's age), academic (the Woodcock-Johnson-III plus other reading comp and wititng tests as needed), attention (among other things, parts of the NEPSY-II), language (Peabody Picture Vocab-4, Expressive Vocabulary-2, NEPSY, other tests and subtests as needed), visual-spatial skills (NEPSY, WISC-IV, others as needed), memory (subtests of the NEPSY-II, California Verbal Learning Test-children's version, Rey Complex Figure and Recognition and others), executive functioning skills (Wisconsin Card Sort Test, NEPSY-II, Intermediate Booklet Category Test sometimes, Trailmaking Test, and others), motor skills (grooved pegboard, name writing, grip strength, design copying tasks, and others), and a bunch of rating scales (usually the Behavior Rating Scale for Children- second edition- teacher parent and self versions, maybe Brown ADD Scales, Children's Depression Inventory, rarely the MMPI-Adolescent, various ones targeted to social skills, adaptive functioning, Asperger's and/or Autism as needed). 

Sorry that was so long... the testing has a basic list of tests we consider a "core battery" for a 12 year old, and we add/take away as needed.  Things can be tailored up (for highly functional and bright individuals) or tailored "down" if we need to get a more basic view of functional skill levels.  The testing absolutely does give a good picture of accurate ADHD or ASD diagnosis, especially if it is as extensive as what we do in our practice.  We would not recommend further Autism screening after our evaluation- we'd either make the diagnosis, not make it, or have a good reason why it wasn't a call we could make at the time and recommend when re-evaluation would be indicated (this would rarely happen- only once or twice when the child would not cooperate with the testing tasks at all).  We would recommend further OT or speech/language testing if we found deficits/diagnoses in those areas, particularly if the child was in school and would likely qualify for services.  Hope that helps!