New diagnosis
I tend to write funny little things that Em does, but there is sometimes more serious stuff going on, and this seemed a good time to bring it up.
As we began the process of revamping Em’s IEP (individual educational plan) for middle school, we decided to spring for testing from a private psychologist. This was because we were concerned there may have been an ADHD component that was being overlooked as we focused on autism. There are many reasons for this, mostly dealing with attention in the classroom, patterns of behavior doing homework, and difficulty recalling a fact shortly after hearing it.
After much soul-searching and several incidents I won’t go into, we finally decided that it was time to consider medication. We have had many years of various therapies. This was considered as a last resort, something we thought we’d never do. But if medication could be another tool in our toolbox, then it was worth at least exploring. If there is something available that will help, but we refuse because we’re uncomfortable with the idea, that’s not really fair to Em.
Contrary to what you may have heard, it’s rather difficult to get ADHD medication for a child. We consulted with our daughter’s very good pediatrician, who reassuringly wasn’t just going to hand out pills. She wanted a full psychological workup before considering it. If there were, for example, an OCD component (there isn’t) then that would require a different approach to medication. So we got a full workup, which miraculously cost exactly the same amount as our federal tax refund. Autism is still in as a diagnosis, obviously, but some of the other results were surprising.
Of interest immediately is that the tests don’t show ADHD. Hyperactive, yes, attention deficit, no. This isn’t a total surprise. She is constantly doing something with her hands. Twisting string, peeling off labels, ripping bits of paper, etc. If I could get this kid to knit, she could crank out enough Jayne hats for me to retire. The psychologist feels that medication could benefit the hyperactivity, and my husband and I are discussing it but right now leaning away from it. If it’s not affecting her schoolwork or social life (we’re figuring out whether it does) then we need to consider whether it’s something that requires medication or something that we should view as just part of who she is.
A couple of new tests that Em hasn’t had before were given, the SCAN-C and the TAPS-3. The SCAN-C in particular tests auditory processing – basically, the ability to focus on different auditory stimuli. Em scored in the 0.1th percentile on each part of the test. Now, Em occasionally has bad testing days, particularly late in a session, but I don’t think any amount of “I had a bad day” would account for a 0.1 percentile result. This leads to a diagnosis of Central Auditory Processing Disorder (CAPD). This doesn’t mean there’s anything wrong with her ears, but rather with how her brain processes the sounds it’s receiving.
That’s a new piece of the puzzle. It could help explain why she may have more trouble taking in information in a noisy school environment than she does at home. It also looks like her long term memory is okay on things that have been repeated a lot (favorite books she’s read a thousand times) and short term is okay on things she just heard (although less so) but it’s the in-between part that’s really hanging her up. The psychologist feels that it’s not that she can’t pay attention, it’s that auditorily she’s having trouble understanding what’s being said and taking it all in, and that it’s not really making it from short term to long term memory. I feel this is a huge obstacle to greater success in school.
Summing up, we have basically the same PDD-NOS diagnosis, however without the ADHD we were worried about but with CAPD (central auditory processing disorder).
Fast forward a week to an IEP meeting at the school. Her “dream team” of specialists has the report and they disagree with the diagnosis. They agree with autism, but feel what the psychologist sees as CAPD is really an attention issue, not an auditory processing one. In their favor is that one of Em’s testing modifications is to be able to read the information aloud during a test, or to have it read to her. It does seem to help. Also in their favor: they’ve worked with Em since kindergarten. The doctor who tested her has a great deal of experience with CAPD, but she only saw her for a total of four hours.
At this point I’m trying to work out scheduling so they can all come together and talk and tell each other what they’re seeing. They’re all willing to do so, because they’re all awesome, but this week is the week of the EOGs (end of grade testing) and things have been nuts at the school. I’m going to start making calls again on Monday.
The medication the psychologist recommended for hyperactivity is called Tenex. While it’s often used for hyperactivity, my reading also shows that it’s primarily a blood pressure medication which has not been approved by the FDA for hyperactivity or for children under 12. So I have an e-mail in to the psychologist to ask about that.
And that’s the news from Camp Autism. We’re wading through some choppy waters right now, but it happens. We’ll get through it as we always do.
We now return you to your regularly scheduled programming – dyed yarn, Jayne hats, D&D updates, and tales of Em’s epic awesomeness.
You had mentioned wanting to get her started in TaeKwonDo, did you find a place? I’ve dealt with a lot of kids who had been diagnosed with many different disorders and while medication can help, martial arts really gives them life skills to deal with better focus, concentration, confidence, social skills in addition to being in a positive environment where everyone is working together.
Em was interested, and I actually have a friend who taught for years and who has experience with autistic kids. He very graciously did a couple of informal short free lessons. Em isn’t certain she wants to continue in a more formal setting, but I’m thinking a “camp” this summer might be a good trial run. There’s a new place not too far from here I want to check out.
On the down side, if it really is an auditory processing issue, then maybe a chaotic place where people are shouting all around her isn’t going to be the best fit. Another reason I’d like to get this diagnosis nailed down.
That’s really interesting (to me at least). I hope they can come together and figure out a good plan for how to proceed.
Did you see this NY Times article last month? Rosie O’Donnell’s son Blake has an APD. It’s all the rage in the celebrity set… (If you can’s access it, use the name “eclipsheet” and the password “badgers”.)
You and Emily have such an awesome relationship, and with all of the parts that add up to who she is, she’s got a wonderful personality. I know she’ll succeed.
This is what concerns me. APD is an area of specialty for the psychologist. Did we get the diagnosis because she was in tune with the symptoms and knew what to look for, or did we get the diagnosis because she’s predisposed to look for it as a first resort?
That said, the 0.1% does seem pretty solid.
Thank you.
I’ve had this problem myself. I have a pretty good psychiatrist who is very nice and treats me like I’m not stupid, but he doesn’t believe that most people, particularly me, have ADD/ADHD. I went through this huge battery of neuropsychology tests and came out well within the range, and I KNOW I have problems. And my shrink was like, “Oh, you had Dr. H. run the tests? Oh, he does this all the time. He thinks everyone has it.”
*sigh*
It comes down to what you know about your daughter and your team, so just keep truckin’.
You and your husband, of course, are the people who know your daughter the very best. Any new light that is shed should fit in with the general picture of her you have already. Although I have a great deal of faith in diagnosticians, 4 hours is not very long to spend with a child – so I applaud your getting the school/test people together to hammer out their differing opinions. (Most school people have never heard of auditory processing issues. And really, when you think about it, it doesn’t matter WHY Emily has trouble attending to auditory information, as long as her teachers know that it’s an issue for her.)
Middle school is such a big step for all kids. Our younger daughter clearly had ADHD, but we were reluctant to medicate. She had a lot of energy throughout childhood and we thought she was just fine that way. Her school work and behavior began to suffer, though, in middle school, and still we chose to deal with that behaviorally. Finally, when she was in high school, she started on Adderall, and she shot up onto the honor roll. I have to say, though, that medicating is a slippery slope.
We have several kids on both sides of the family who medicate to good results. Knowing that they’re well-adjusted kids who are doing much better now as a result did a lot to help us come to terms with even considering this.
Part of the reason we’re considering it now is that the work is getting more challenging, requiring greater attention for longer periods of time, and she already has trouble with her autism understanding things which are second nature to others, like why people in books take certain actions. The work isn’t going to get any easier, so clearly as parents we need to take our game up a notch.
Also, if we’re going to do it, now is the time. She’s in a setting where everybody knows her and she’s comfortable. If we wait until next year there will be quite a few variables, making it harder to tease apart what’s making the difference.
You are so right about middle school – the academic challenge increases, the homework increases, the demand to become more independent increases and, most of all, the social challenges increase exponentially. Just when kids get more rejecting of their parents’ help! You seem very wise about easing Emily into new situations, and about creating opportunities she is comfortable with. I read your reports with great interest and admire your equanimity – probably from your side it doesn’t feel like that!
You have wonderful instincts, and I’m sure they will help you make the absolute perfect decision for Em. I think it may be a good idea to consider that both sets of professionals my be right, to a degree. It could be that in a one on one situation, being read instructions or given direction in a calm, focused manner does increase her processing. But she could also have some slight CAPD that makes processing verbal information even more difficult in environments where she already struggles due to chaotic input. If CAPD specialists have adaptive communication techniques that might be helpful regardless of diagnosis … then that could be a win for Em. I’m always hopeful that a fresh therapy POV might suggest something that will be a key to unlocking the next level of awesome advancement for my kiddos … even if before they give me those nice shiney keys they say diagnosis stuff that makes no sense whatsoever. ::chuckle::