neurofeedback

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Hi. I am a mom of a 9yo who has Aspergers. I am considering starting him on a neurofeedback program called Cogmed, with the hope that it would facilitate his capacity to focus attention and to learn math. Has anyone had any experience with this? Is this something that would be good for him?
Roupper

[Moved from General Autism Discussion to Parents' Discussion]

We did use Cogmed and found that it did help for working memory for our then 8 year old (she's now 10) DD. There are a few things that are important however:

1. It is very important that the neuropsychologist you use for your program be a good one. An intrinsic part of the Cogmed program is feedback from the therapist, so if you have a so-so therapist, it's likely that progress may be hindered by this therapist's input. From what I understand, since the therapists have to go through the Cogmed training, most are pretty good. But in order to get the best results, it's key that you have a neuropsychologist that is good in his or her own right.

2. The testing should be done after a thorough work-up by a neuropsychologist. For example, we found that our DD had ADHD, in addition to her Asperger's. We had to make a decision as to whether or not she would take medication for the ADHD prior to working with the program, as the program does target executive function deficiencies. Deciding whether or not to medicate, and then if choosing to medicate, getting the correct dosage plays a large part in how the program may affect your child.

3. This is a rigorous program that does require a lot of time from the "coach". Some parents thought that the process was one whereby you just plant a child by the computer and let the program run. In truth, it takes a lot of effort to keep kids with this program, particularly since it gets progressively more difficult (the adaptive feature) as your child shows proficiency with the tests.

4. It takes awhile for the full benefits to be seen. We didn't see "results" from the program until almost two months after we had finished it.

Some final thoughts: we chose to medicate our daughter after we got the ADHD diagnosis (we had a suspicion, but the neuropsych confirmed it). However, we didn't start Cogmed until about a month after we optimized meds. Were the results we saw only a result of the medications she was taking? It's possible, but it's a little bit of a "chicken/egg" issue (was it the meds that helped or the Cogmed?). We gave our DD meds because we were trying to optimize her working memory in any way possible. We were somewhat desperate that year, trying to figure out how such a bright child could be floundering in school. But two months after our DD finished Cogmed, she began to be better organized; cleaning her work area at school, starting and finishing projects that before she would be all over the map with. She was calmer about doing activities and seemed to have a "plan".

Things have changed since then. Last year she asked to be taken off meds, which I fully respected (I had asked her about getting off meds when she was younger, but I suspect she didn't quite understand what we were asking). That, coupled with home schooling this year, has changed her so much; she's incredibly capable and her anxiety has completely disappeared. I suspect that it was the anxiety about her (brick and mortar) school that may have been causing some of the working memory issues. Stress does not help! My DH and I will fully follow her lead. Thus far, she has been clear about wanting to continue homeschooling (which we will) and staying off medication (which we absolutely will).

I am curious about why you specifically mentioned math. This year, despite the homeschooling, we were still seeing some "issues" with math. While our DD could do the math applications as part of a lesson and even for the "end of unit" tests, she had difficulty recalling even the easiest algorithms on standardized tests. Part of it was that these tests test out of sequence (a word problem, followed by a double-digit multiplication problem, followed by a geometry problem, etc.). Also, on tests, multi-part math questions were harder for her. We had a learning specialist look into dyscalculia. What we found out was interesting...she definitely has test anxiety (and no, we are not going to medicate!) - with anxiety comes a decrease in the ability to demonstrate proficiency. We also found out that she has pretty standard math skills for her grade (her language arts/reading is off the charts..but no surprise there since she was hyperlexic and loves to read). It was actually her ADHD-PI (predominately inattentive) that was the issue. Frankly, she just doesn't retain information she doesn't like! So, while reading a passage about bugs is endlessly fascinating to her and she can comprehend the entire text in one pass, math is inextricably hard. So, no learning disorder with math - she just plain doesn't like it! Knowing that, I have been able to tailor her math lessons to something she can tolerate (standard algorithms, none of this "new math" for her) and we just go over it slowly and repeatedly. I also explain to her that if she wants to be a zoologist, scientist, or artist, at some point she will have to know the fundamentals to get through college and then make budgets and invest. So I try to make math relevant to her.

Hope that helps!

Hope you don't mind me butting/joining in. This was recommended for my almost 16 year old as well for working memory. We haven't done it yet, but I am questioning whether or not to do it at some point. He has anxiety and it is being treated medically right now. We are seeing improvement w/meds and I'm wondering if improvement in that could be improving his working memory. His grades are soaring in the last few months and he has straight A's and is fully mainstreamed. He does not have ADD or ADHD. Is there any benefit to doing something like this for a kid whose grades are really good? Not a small leap financially since insurance doesn't cover it.

A friend of mine did nuerofeedback with her son and felt it was a complete waste of a lot of money.

Have any scientific studies been done on the effectiveness yet? So far, it seems completely experimental, and there is no way to know if the people who have seen some benefit would have gotten that anyway. After all, kids grow up and mature to huge degrees simply because they are programmed to.

This is what I was thinking, too. Neurofeedback is surely treading into pseudo-science territory...

I would imagine that as long as you are starting the program with the tools/abilities that you will have by the end of the program (meaning no additional meds, for example), the program should still be effective. In other words, if you control for all other things, but just add the Cogmed, you would see truly whether or not the program worked for you. This is why we chose to start the program after optimizing our daughter's meds. Whether or not one month for the optimization was enough time is sometimes what I question. I don't know from the academic standpoint if you would see much improvement - it's not a "magic" program, for sure.

We did the program not just because of the academic issues (although those were a big issue at the time, compounded by stress), but because of the anxiety we were seeing at home. Her working memory was an issue outside of school too. Despite the ADHD medication, our DD was still having trouble with organization. She would sometimes come downstairs to put on her shoes, but then forget why she was downstairs and start playing in another room. We had "projects" all over our house - sewing kit fabric, drawing paper, art supplies...It was difficult for my DH (who also may have Asperger's) to cope with the mess. He would get frustrated after repeatedly reminding our DD to clean up. This led to even more anxiety. I tried to mitigate it, but I wanted to look for some long-term solutions for her. At one point, our DD was on meds for anxiety too, but it changed her personality somewhat and there were some physical side-effects that she had that she and I didn't like. She asked to get off the anxiety meds too.

You are absolutely right in that it's not covered by insurance. It's unfortunate because not all children who undergo the initial evaluation are good candidates for the program (a good neuropsych should tell you this!), but for those who are, this program could help. My DH and I felt that it couldn't harm our DD to try the program. It was an investment of money *and* time, but we felt that it was an investment worth making. In retrospect, we needed to get through Cogmed to get where we are today. DD's focus did improve and the sessions we had with our excellent neuropsychologist helped us a great deal. But not everyone has the same results. Only your family can decide if it's an investment worth taking. Because the clinicians associated with this program should already have clients in their practice, I think the likelihood that you are getting a doctor to "sell" you something is slimmer than someone just offering neurofeedback services. We chose our neuropsychologist based on feedback from other clinicians, who had no idea about her Cogmed connection.

Last edited by audball on 01 Jun 2012, 10:55 am, edited 3 times in total.

This program isn't one of the standard neurofeedback programs I had heard about. I tried to do as much research as I could, but three years ago, the only main articles I could find were from the scientists in Sweden who did the initial work themselves! I was pretty skeptical, because I do have a science background. They cite studies, but they are all on the Cogmed link, and if you do a search with a standard search engine, most of the links take you back to the Cogmed site. Pretty shady in my book.

However, I did read the information very carefully and this program is a series of computer "games" that are done in conjunction with a clinician. The games/tests are dynamic and the clinician is supposed to talk with you about the changes you are seeing and why you are focusing on the next series of exercises. I'm not sure if standard neurofeedback has this kind of interaction. This is a daily program that is done at home for 5 weeks, so again, a little different from the once a week or twice a week visits with a neuropsychologist.

Also, a lot of the cited literature came from clinicians who had worked with brain injured patients. I'm one of those people who think that autism may be attributed to the differences in the amygdala (prefrontal lobe). This program was developed with the idea that one works on exercising parts of the brain to find different pathways for working memory skills. I didn't think it was quite "voodoo" science because frankly, I know that if you do puzzles to challenge yourself cognitively , you do see some improvement with certain skills. However, are they long-lasting? Do they translate across the board (meaning, if I do this "puzzle", will it really improve my ability to organize my office?)? In our case yes. But I did scour the message boards and found that some people didn't see any noticeable difference. I'm not sure if they were in that "waiting period" we had been in, right after the program (where we couldn't see any changes) or if it truly didn't work for them.

And whether or not it's worth the $2K+ (US) for the program? That again, depends on the individual. One could argue that the $2K could pay for a lot of *other* therapies, experiences, tutoring...we were at a difficult point with our daughter's development and felt it was worth the try. For us, it paid off. But Cogmed is very careful to not over-promise. They say that the program is a set 5 weeks...so no add-ons like additional therapy, tools, etc. I liked that aspect, since I didn't want to feel sucked into paying for a year's worth of therapy with nothing solid as proof of improvement. And, the clinician's are supposed to provide you with data which support improvement with working memory, which we received. But the proof for us was in our DD's abilities at home, which were improved.

I think due diligence is in order and again, every family should evaluate whether or not it will specifically work for them.

ETA: What I said about the working memory links and Cogmed are not entirely true. If you search now, there are some studies that are done with working memory that are independent of the Cogmed research. It may have been, at the time we were looking into this program, that only Dr. Klingber's papers were the ones that were primarily cited. I would look specifically at peer-reviewed journals such as Science, Neuroscience, Nature, or PNAS and the like...not things like Discover or National Geographic (nothing wrong with them, but they are not necessarily peer-reviewed).

I also forgot to add that I didn't answer your statement exactly, DW_a_mom. It is possible that we could have seen our DD do many of the things she does now automatically (like clean up her workspace, acknowledge getting back to something and actually doing so) with age. As I mentioned, she was 8 at the time we tried Cogmed. We now see her doing these tasks completely on her own, but we saw her starting to try and acknowledge finishing what she started a few months after the program. Maybe the "awareness" was always there, but she didn't put it into practice until after Cogmed. We could have certainly tried to wait and see if she could have done these tasks on her own, but she is our first child and the only of our two children with working memory/executive function issues. Her brother is like me; we are wired with exceptional executive function skills. We honestly didn't know if she would "age out" of some of her issues and we didn't want to wait to find out. This is, of course, anecdotal, so YMMV

No worries, I think we're all just trying to get as much broad based information out there as possible, because once you leave the beaten path of accepted medical protocol, it all gets super tricky. But some cool things do happen outside the beaten path of medical protocol, it isn't all snake oil, so we definitely want it to be discussed and considered. I've just always been the devil's advocate type

I am happy you had a meaningful experience and can talk eloquently about it.

Thanks! It's good to hear from someone who has actually done the program with their child. I am concerned about getting through the 30-40 minutes of work a day, for 5 days a week. My son likes computers--but he wants to watch train and plane videos. Staying on task with something else might just be one more conflict.