ADHD?, Asperger's?, CAPD?

Have you noticed any differences with your son taking medication? I don’t know that I would be comfortable with a 30 minute over the phone diagnoses from the pediatrician.

It sounds like you need a comprehensive evaluation to help you sort out the issues. you can ask your board of education for an evaluation, although most people on this board seem to feel that private evaluators are more thorough, if you can manage it. A neuropsychologist would be a place to start.

I am not sure that any of the professionals that have their opinion about my son have given proper evaluations. I have recently watched programs that have stated inorder to properly diagnos Austism or any of the Austic Spectrum Disoders, there needs to be several days of evaluation. My son was evaluated by a psychologist for about 2 hours and we (my husband and I) filled out questionare forms, and were given the Asperger’s diagnosis. This is a disodered that is supposed to be difficult to diagnos and we were told our son is a mild case. When we went to other professionals to get second and third opinion, we just seem to get more confused. We even went to a well known University for a second opinion and brought our son for testing, that I was told it could take all day, that lasted about 3 hours. During this time he got frustrated with the math section. I talked with the neuropsychologist (not person during testing) and she felt he had ADHD, but when I went to pick up the evaluation it indicated mood disorder. I asked questions, but left confused. That was last year. This university never did a speech/language evaluation. I wanted to know why, because of my concerns of CAPD, so I called. That was a week ago and I still have not heard from the neuropsychologist. My son struggles with math. It doesn’t matter how much we practice with flash cards, he just doesn’t seem to remember his math facts. He gets frustrated, so I don’t do it with him. Writing is another area where he struggles. He can verbally tell me what he wants to write, but when he goes to write it it seems like he hits a wall. All these professionals told us that there was no learning disability. Then why am I getting notes from his teachers about how long it takes him to complete his assignments?

Hi,

It sounds like you have been subjected to a lot of new information and conflicting diagnoses in a short period of time, so no wonder you are confused. I’m confused just reading your post, but it doesn’t sound like anyone involved has a real handle on what is going on with your son yet.

Maybe you could have an Educational Consultant look at all the overlapping results and testing you have, and give some concrete recommendations. It looks to me like the main question you have is, “How do I help my child do well in school?” That is an educational consultant’s main job to figure out. Every expert so far seems to be seeing what they want to see, and that is just not very helpful! You need someone who can be objective and doesn’t have an ax to grind, if you know what I mean…

Every child is different and has a different “constellation” of both strengths and weaknesses. You can look at it as a “puzzle” you are trying to post together. I think if anything you had tried so far was helping in some way you would probably feel better than you are, but it doesn’t sound like that is the case. Usually a neuropsychologist is the person who looks for the “big picture” but it doesn’t even sound like that has helped here. If you do want to look at CAPD as a possibility, I know that you will need an audiologist with some specialized training for that. I know some places near where I live (Los Angeles) but not in other parts of the country. Anyway, your health insurance should cover that if you can get your pediatrician to make the recommendation for this kind of eval.

Even if he does have CAPD, though, there is still an open question as to what to do about it. Would an FM station work for him? Does he need those special ear plugs? Or does he need speech therapy? (I know you already tried that, but he probably needs it with someone who specializes in auditory issues, and not every SLP does.) There’s a lot of open questions here, that’s why I think you need someone who can help you in putting the pieces together, and most importantly, give you directions for treatment and help in school. Good luck in your search!

Shoshie,
What is an Educational Consultant? Do school districts have one on staff? I did sign paper work for my son to be evaluated by the school’s speech and language therapist. I thought I should wait to hear what she has to say, but I get the impression from other moms that I should have my son’s pediatrician recommend an audiologists because of how long it takes to get an appointment. I live in Michigan. Thanks.

No, I don’t think the school district will have an educational consultant on staff, though some of the teachers might be knowledgeable enough to serve as one. I wish school districts could be so advanced as to try and actually help parents find the help they need, but that usually isn’t the case! In my experience they prefer to keep parent ignorant about what is out there, because once parents know about it they are going to start asking the school to pay for it! Partly because of my own experience and training as an RSP and special ed parent, I have done some educational consulting myself, mostly online, but also for local parents through my educational therapy center. I know of at least two Ed. Consultants in the greater LA area, so if you are near any size of a metropolitan area, you might be able to find one. Many educational psychologists are quite knowledgeable also, but it all depends…

The best way to look is probably to search online, just put in education + consultant in your search engine, and the closest city/state and see what it comes up with. If you get a phone number, call them up and give them an idea what you need, and see if they sound knowledgeable enough to help. If you don’t need local resources, a person anywhere in the country could probably help, because what you need are “directions” rather than specifics right now, it sounds like. You should probably find someone who is qualified to give tests themselves (both of the ones I know are) though, because once they look at all the data you have from other sources, there may still be some measures that could add clarity, rule out certain things, etc.

As for the Speech and Language eval, that could go either way, and here are the issues. If you wait for the SLP at your school to do it, and you feel she doesn’t do a very thorough job or you disagree with her findings, you might be able to request an Independent Educational Evaluation (one of your parent rights) and have some outside testing done at district expense. You can also request CAPD testing to be done by the district, and they either have to provide it through a district person, or if they don’t have anyone trained to do it they must pay for you to have it done outside. Again, the same thing applies if you do not agree with their results, you can request an IEE.

On the other hand, you could try and go through your health insurance if they will cover it and then just share the results with the district once they are available. Be aware that they don’t necessarily have to FOLLOW all the recommendations, though, even though they are required to “take it into account” whatever that means! Also, you will feel you have at least two perspectives on the issues, rather than just being stuck with whatever the district tell you. It is also true that going this route usually saves time, versus the other method, as I’m sure you can see, so I would recommend it as my first choice, since you want to get to the “next steps” stage as soon as possible. A good educational consultant may also be able to direct you to someone who can do this testing reliably and promptly, unless you have to use the provider suggested by your health insurance. If you don’t like them, you can always find a private provider, at your own expense, of course. Unfortunately, like so many other things, you often get what you pay for, and can only feel like you are in the driver’s seat when you are the one paying for it!

Anyway, hope this helps, let me know if you don’t find what you are looking for!

We have also found that each person, while knowledgabe in their field, often will diagnose what they know. A speech person may find speech issues, an OT motor issues. A *good* neuropsych can usually bring together the results of many different types of tests and draw you a bigger picture, if not a clear diagnosis. There are just some kids (many with parents who come to this baord) who do not fit neatly into 1 dx . Some disorders are co-morbid and you may get 2 diagnosis or more.
A good develomental pediatrician or child psychiatrist can also often pull together the pieces. I’m not familiar with the concept of an educational consultant, but what shoshie describes sounds good as well.

Where are you located?

oops just saw you live in michigan.

One way to find good resources, if asking your pediatrician and friends doesn’t yield someone you think can help, is to contact local LD schools. They often know who inthe community does a good job of testing children with issues and teasing out what is going on.

Check out www.ldresources.com for a list of schools in michigan that serve LD children.

Hello,
I found out yesterday that the neuropsychologist at the univeristy does not recognize CAPD as a disorder. She said it is not something that can be measured and there for does not exsist? I am so confused. She feels that my son has anxiety, and that is causing him to daydream and not complete assignments. I don’t buy it. If he understood concepts or directions, he would do the work. I have seen at home when he is avoiding an assignment because he doesnl’t understand the directions or how to get started. Help.
Very Lost in Michigan

First of all, a neurospychologist cannot diagnose CAPD, although I am not sure why he or she would say it doesn’t exist. It is diagnosed by an audiologist and actually is much more objective to diagnose than ADHD. Some of what you describe does sound like CAPD so I would suggest that you start by having him evaluated by an audiologist. You need to find one that specializes in kids and in evaluating auditory processing issues (as opposed to hearing). I looked on the web and found some names that way.

Second, kids can have both ADHD and CAPD. My son does. The ADHD has become clearer to me as we have strengthened his auditory processing skills. Early on though (first to second grade) we saw big improvements in attention when we addresssed his auditory processing deficits.

Third, my son was also evaluated for Asbergers. Now at 11 it is very clear that was not a correct diagnosis. At the time, he was referred to a neurologist by his pediatrician who had gone to asking about the possibility of ADHD. The pediatrician, quite wisely I think, looked at the alphabet soup of diagnosises my son had, and referred him to a neurologist. The pediatrician was concerned because my son spoke in a monotone and didn’t look at him.

There are lots of configurations of disorders you can have but in my son’s case he has nonverbal learning disabilities plus ADHD plus CAPD plus dyslexia. His nonverbal learning disabilities have accounted for difficulties in math, although they are not at the level of a syndrome (more severe). CAPD also makes learning math facts difficult because it is a verbal activity.

You might look at the book When the Brain Can’t Hear by Teri James Bellis for more information on auditory processing disorders.

Beth

Beth,

When you discribe your son, you discribe mine. What does the neurologist evaluate? How did you find out that your son was miss dianosed as having Asperger’s? Did the neurologist eliminate this? How has the school helped?

Thanks for sharing,
We- five

My son was never diagnosed as having Asbergers. The pediatrician suspected it, enough to make a referral. The neurologist eliminated it because my son does not have obsessive tendencies, which seem to be a hall mark of Asbergers. He does have some nonverbal learning disabilities which account for the behavior the pediatrician observed.

The neurologist diagnosed nonverbal learning disabilities, ADD-inattentive, and suggested that he had dyslexia. We had previously received a diagnosis of CAPD from a audiologist, receptive language delays, auditory processing and word retrieval deficits from a speech and language therapist, and sensory integration disorder from an OT. He had tremedous difficulty learning to read so we had already concluded dyslexia.

Basically, I think of my child as having nonverbal and language based issues combined with CAPD and ADD.

The schools have been little help frankly. He was pulled out for math and reading for first and second grade. He was put in the classroom for math in 3rd, after we’d done much therapy privately. After fourth, we moved him from public school to parochial where his siblings were and had him repeat fourth grade. They have some resource help available and he used it some last year but not at all this year (he is in fifth grade now).
Almost all that we have done that has helped has been private but he is doing well now both socially and academically.

Beth

Hello

Well, I made an appointment with a neurologist and have had a discusion with an audiologist. The audiologist wants to review the speech and language evaluation (not completed testing yet) from the school. It was a very interesting phone conversation. She indicated that the scores from my son’s previous testing indicated possibly a learning disability. This was not indicated with the two previous professionals’ findings. All I know is that I have a great kid who teaches my something new everyday.

We-five

Hi We-five,

Sounds like your audiologist has some useful knowledge, so once she has finished evaluating him, ask her for some referrals to other related professionals; she should know of some good ones. You may also need the help of an advocate to get what you need out of the school district, once you have all of the pieces, or even the majority of them. A good advocate is often very good at putting the reports together and drawing the “big picture,” especially in terms of how best to help a child and what to ask for in terms of services and placement, goals, etc. For example, your son may be eligible for a non-public school placement, or for outside OT and educational therapy, among other possibilities. But if you don’t know what to ask for, the school is not going to volunteer it, you can be sure of that!

I agree with Beth in FL that the neuropsychologist does not know what she is talking about when she says CAPD does not exist. She is not very knowledgeable if she says that, because that is not her field of expertise —though it is a related field, and it makes me suspect her competence that she would even say such a thing. Maybe she has a “vested interest” or was influenced by a school she works for, who knows? It does seem frustrating sometimes to try and find someone to put the pieces altogether, and like Beth said, it often seems that each specialist somehow finds what they are looking for in your child. That doesn’t mean it isn’t really there, though when you read the report you should be able to tell if it does sound like your child or not.

One parent I know was recently told by the school psychologist that her five year old child had autism. I have worked with his older brother (who is dyslexic), so I’ve met the brother on numerous occasions, and I was simply flabbergasted, as was his mother. This child does have speech problems (which is why she took him to them to be tested), but he makes eye contact and socializes very appropriately most of the time. It turns out he didn’t like the psychologist very much, so he wouldn’t meet her eyes or engage with her, much less follow her directions, so that is why she thought he was autistic. We all had a good laugh about that, because as the mom said, “I didn’t much like her either!” Anyway, just to rule it out and verify our sense of things, we had a private SLP evaluate him, and she was absolutely certain he was not autistic. Sometimes you just have to trust your instincts about things like that. Anyway, hang in there and you will find all the pieces eventually, just start following up with the best therapies you can find as soon as you can. You can’t do everything at once anyway, but start with what you do know, and be assured the rest will fall into place eventually if you don’t give up.