Worn out by lack of a diagnosis...

Has he ever been tested by a multidisciplinary team like Dr Levine does? Dr Levine wrote the book all kinds of minds. I hear it is impossible to get in to see him because he was on Oprah and his book is a best seller.

He uses multidisciplary team approach. A psych, neurologist, education specialist etc. He looks to define strengths and weakness without applying lables like dislexia etc. Sounds as though you have been put through the label mill. Geeez how irresponsible of these so called professionals.

I know that Dr levine does alot of training of other professionals to use his methods. Maybe you should look around for someone in your area that has been trained in his methods.

I myself haven’t done this. I may do if eventually but so far my son is doing well with the help I have been able to get. I could rattle off about 10 labels that would fit him but I won’t.
The best help I have found was from an OT specializing in sensory integration. If I had relied on the school testing I would never have been able to get him the help that he needed.
I had to convince them he needed OT, it was never offered. The OT at the school told me it was sensory integration. She helped him some but I have found an outside SI OT who has helped me to understand the problem even more.
Most insurance companies should cover OT if you can get a good OT who knows how to code it properly.

I cannot say that you child is or is not Asperger’s (or autistic), but it is a mistake to assume that he cannot be because he is not profoundly affected. About 25% of the children with autism are very high functioning to the point that many would not label them autistic, but instead focus on their “anxiety” or “attention deficit” or “OCD”. And Asperger’s generally tend to be higher functioning, often being in the upper quartile of intelligence as well. Their problems are primarily manifested in their difficulties with social interaction, processing abstract concepts and communication limitations.

Again, I cannot and will not say your child is or is not an Aspie. I will suggest you take him to someone who is qualified and experienced in using the DSM-IV to give you a proper diagnosis.

Good luck to you…

Hi Karen,

This process is incredibly tiring. I have often been worn out. There have been times when my mind would race and no matter how hard I tried, it was all I could think about. But, it is funny, I never pursued a diagnosis. I was afraid of the label and I didn’t want it. When I began reading about NLD and other disorders along that spectrum I was so frightened for my son. I am not at all anymore and it is because of my son. Now, I don’t care if he has a particular label or not. He knows he is LD, he has several books about LD. He says his LD is motor based and he has decided, with the aid of these books, which LD several of his classmates probably have. Funny, he is probably right about his classmates (and thank goodness he is sensible enough to keep his thoughts about these kids to himself)—If someone asks, he will say I have an LD and it’s not a disability it is a difference. There are bits and pieces that could be this disorder or that disorder but I guess LD is enough for me. He is different.

I didn’t think I would gain anything by a definitive diagnosis. Now, if I were fighting the school system for accomodations, etc. it might have been necessary. But since I wasn’t and I already knew his weaknesses and strengths, I had all the information I needed to intervene.

I think there are very few kids who fit neatly into one box or another. By all means, put him in one if it gets him what he needs—why bother if it doesn’t? Take what has worked for the similar weaknesses found w/ dyslexia, NLD, Aspergers, etc and use those. Try not to worry about fitting one diagnosis.

BTW, thanks for responding above…boy did I feel like a fool when I found out it was a diiferent test. I am sure the saga will continue tomorrow when the psych and I talk again.

Stay well,
Margo

There’s a reason the title of one of the books on NLD is called Square Pegs, Round Holes (or something like that). If my 11.5 yr. old 6th grader had to meet ALL the so-called criteria for NLD, she wouldn’t be labeled that way, she’s way too good in math. But so much else fits that the NLD label is useful: it is a handle for describing many, but not all, of her strengths and weaknesses. I just say she’s NLD but doesn’t fit the “classic” profiles in all ways (i.e. math strength). She also doesn’t seem to have as much visual-spatial impairment as some NLD kids, but boy, is her executive function in the pits!

So you really do have to go with outline of strengths and weaknesses: how use strengths to compensate for weaknesses, etc. ultimately some of us need labels for sped services, but many of our kids don’t fit into one “box.”

Hang in there!

Karen,

I understand where you are coming from, but I’ll have to agree with some others here, few kids fit an exact profile. Kids brains are all so different! I have two children with very different problems. One has had symptoms for years like problems sleeping, unable to focus and concentrate, anxiety in certain social situations, depression, etc. We’ve gone to three different doctors including two psychiatrists, and we have gotten many different diagnoses! Our son also does not fit into one neat little category.

Our youngest child had a language delay and was eventually diagnosed APD. But would we have to have had the APD diagnosis to know what to do for her? Not really. We know she needs an intensive multi-sensory structured language based reading program. We know she needs language therapy for certain areas where she scored low. I knew she had AP problems. It is frequently a cause of LD. But the remediation techniques for her reading problems are already known, and I wouldn’t have needed the APD testing to know that.

School personnel are not qualified to diagnose problems like Asperger’s, autism, sensory integration disorder, APD, etc. These diagnoses must come from specialists and be treated by specialists for the most part. Some of our children have multiple problems that must be dealt with multiple interventions. I say, forget the official diagnosis and concentrate as you said on addressing the deficits that effect his progress in school.

Janis

I srarted to respond but as usual AOL kicked me off. They suck!!!! I” try again… Ambiguous and intermittent best describe his symptoms. A diagnosis is supposed to identify a cause but with all the hocus pocus surrounding ADD LD ect all you really get is a lable that often innaccurately describes symptoms of a CNS dysfunction. Because his symptoms are varied and borderline one or two possible primary causes come to mind. 1. Food allergies (allergy testing is a joke) Try an elimination diet. Get a book on how to do it. Enviromental toxins. Have you noticed a pattern? Emotional triggers has your boy suffered an emotional trauma such as a death of a loved one? I think the psycho-babble labels do more harm than good. Take LD for instance it has 100s of causes. His symptom may not be neurological per se and doctors only know what the drug companies and medical schools want them to know. Will have a label do you much good?

I don’t know what yuor son has difficuty with but usually kids I see who have trouble getting a diagnosis have sensory integration dysfunction. I would look into that.

Cheryl,
What are some of the characteristics of the children you see who are difficult to diagnose and have SID?

Sorry to answer a question not directed to me, but have you read The Out of Sync Child by Carol Stock Kranowitz? I highly recommend it- available at Amazon. Of course, very few kids fit every criteria. For example, my son is definitely not tactile defensive, but there was a real problem w/his vestibular sense, bilateral coordination, motor planning and visual motor. The OT really helped on the vestibular and motor planning w/ OT.

You might want to find an OT who specializes in SI. At first, I thought my son was no way SI…I mean I envisioned a kid who would be touching everything or rubbing himself against a wall or holding his hands over his ears at a movie theater….but it was really not like that for us. Does your son bump into things? fall off chairs? how does he hold his cutlery? tie his shoes? if you gave him 3 things to carry, how would he organize himself to carry those objects? how is he w/personal space? does he veer into you when you are walking down the road? These were the kinds of things we had trouble with. SI therapy, motor planning work and body work helped w/ alot of this.

Margo

I guess the question to you would be what are you needing from the evaluation?

Is the school refusing services,an IEP?

If you have the IEP and are in search of what he needs in a classroom,does your eval have this? If it does,what difference does it make what you call him?

If it doesn’t,what difference does it make what you call him?

Either way,you are at a loss for what he needs in a classroom.Then you need to either have a discussion with your current evaluator or find another one.

Ditto. To respond to cheryl’s excellent recommendation and Margo’s response - my son has done OT in the past. While not classically SI we do think there is a sensory element to some of his behaviours. We have an appointment with a well respected OT on Monday as a matter of fact to revisit this area.

One of the reasons I have been trying to figure out what is going on with my son is not to have a name to describe what it is (although it would be nice to have an easy way to describe him) — but to make sure we are choosing the right interventions. For example we started him with an Orton tutor b/c the school thinks he’s dyslexic. Our evaluator thinks he’s not and needs a different more eclectic approach. And its my decision and I’m afraid of making the wrong one. Do I take him away from a tutor he likes but may not be optimizing his potential to put him with someone different. I wish I had a crystal ball.

I know all of you are right in that none of these kids fit neatly and in many ways it doesn’t matter. I’m just feeling the stress of making these important decisions on his behalf and wish it were a clearer picture.

Perhaps I have said this before. I am finding that private practitioners are very willing to diagnose Aspergers or high functioning autism based on minimal symptoms. School and regional center personnel cannot do this, they are pretty much required to stick more closely with the DSM IV criteria. This may be what you have encountered. Private practitioners are not accountable to anything but making the parents happy. Many times the parent of a child who has come “quirks” is happy to receive a label they can use to demand special ed. services for their child. Sometimes this is a child who would not otherwise even qualify for much. I suspect this is why some doctors are quick to diagnose autism spectrum disabilities, even with only 1-2 criteria are met, rather than 3-4. In one case I work with the Dr. did NOT even use an autism assessment tool, these are available for both autism and for Aspergers. Dr. just gave a WISC and a Vineland and made the call.

On one hand, I would say that it is important to understand what is underlying a child’s problems in order to do the right things. I had a good friend and her friend visit me in January. The friend of a friend has a 4 year old child with something clearly going on. Sounded like SID to me and I gave her my copy of the Out of Sync Child. She took him to her pediatrician who said severe ADHD. Then she went to the school district’s early intervention program and the diagnosis was severe SID. There the diagnosis makes a lot of difference because the treatment is very different for what can be similar symptoms.

On the other hand, our kids often have some characteristics of disorders without fullfilling the diagnostic criteria. My son, for example, has some characteristics of NVLD but not a full blown case, perhaps like your child. One poster on this board once said to me when I was trying to figure out if my son fit the NVLD profile that what I should think about is whether my son would be helped by the kind of things that help NVLD kids. I think that advice makes lots of sense.

Beth

Karen, I’m really struck by your hope/need to do the right thing for your kid. Boy, can I relate!

My message for all of us is to recognize that we are doing the best we can with what we know NOW. We will not always make the right decisions. But a lot of times we will. We need to give ourselves credit for the incredible resources we provide for our kids —

After a couple years in this world of LD,ADHD etc. I finally realized that we couldn’t do everything at the same time — that I needed to both listen to professionals and trust my own instinct about what would benefit my daughter at a given period of time — and interventions needed to change over time (she didn’t need individual therapy at age 8, she does now; after 2.5 years of OT she’d had enough, it was important to stop and focus in other areas; etc.)

Just take it one step at a time.

If your child has trouble reading a reading program that works for your child is the best step.
Dyslexic or not, that is the first step. If orton is working stick with it. If you don’t see progress look at lindamood bell or phonographix. (reading reflex) The word ecclectic scares me. Please don’t tell me they want you to pursue reading recovery.

If she has fine motor issues or handwriting difficulties get OT involved. More serious motor issues may be sensory integration but the OT will be the one to spot that.

Sequencing issues and organizational issues maybe interactive metronome will help. Perhaps audiblox would help.

Just take it one day at a time. With each intervention you will find out more if you are working with true experts. The whole picture can be overwhelming and scary but if you really look at your child I bet you know the areas where the most prominent deficits are. Just take one deficit, remediate it. Then go to the next. It all doesn’t have to be done immediately. You can really feel great when you see progress in one area. There are no magic pills or magic treatments that will do it all.
Some deficits may never be fully remediated, then you look at accomodations. All the while celebrating her gifts and giving her a chance to show them off whenever possible.
It is a road not a destination.

One last thing. You are not alone. We are all here to help. I have never seen a forum with so many powerful, gifted individuals who are so incredibly motivated to help children.

I agree with Linda. Not sure that evaluator is an expert on reading issues. Yes, the child may also need something like LB Visualizing and Vebalizing to help with comprehension, but for children with decoding problems, OG, LB, and Phonographix are the three main things to try.

Janis

To everyone: thanks for telling me what I we all know… but sometimes just need to hear again so you don’t feel like you are the only one going through it!

I understand the point of taking into account each weakness and remediating it, but I’m wondering if it might be more effective having a better idea about what’s going on so we can start with the “core” of the difficulty.

For example, with regard to visual perception, I could start my child with vision therapy, but if his diagnosis is SI, the best place to start might be to deal with the SI problem first and then follow up with visual therapy.

Another example, with regard to pragmatic language and memory. If my child has SID, I might remediate differently than if his difficulties are caused by high functioning autism or non-verbal learning disorder.

Although remediation takes time, I sort of feel as if I’m in a race to figure out what’s going on so I can find the best type of remediation in the most helpful order. So many experts point out that it’s important to catch problems as quickly as possible so remediation can be most effective.

What are the names of the autism tests dr’s would use for diagnosing Aspergers and PDD?

WHAT THE HECK IS READING RECOVERY? We are using it at our K-2 school for our kids who are struggling with reading but are not special ed. We are also using Guided Reading. I’ve tried asking for an answer, but of course get vague answers as always. My youngest (7 years old) is struggling and has been in these two programs all year. Older brother has dyslexia along with a whole bunch of other things.

It is the name of a reading program that had a lot of hype but is not good. I’d suggest getting out of that and gettting her outside help with something like Phono-Graphix immediately. If you do a search, you will read that Reading Recovery is not recommended by those who have studied the reading research.

Here’s a good article to take to the school to illustrate some good programs.

http://www.schwablearning.org/Articles.asp?r=318&g=2&d=5

Janis

Funny you mentioned that. I was going to start my son with vision therapy but started to go the SI route because of the SI difficulties picked up by the OT.

I was reading that vision therapy is not the solution for a child with visual spatial issues if the problem is SI. The therapy needs to integrate all the senses. Vision therapy just works on one.

I don’t think this is something anyone else could have figured out. I figured it out because I know him so well. I know how he responded to SI therapy at school. It really seemed to help.
It is funny I always felt like his teacher was pushing the ADD designation but I thought it didn’t fit with all I knew. He didn’t have problem the previous year with attention. She only saw him one year in one type of setting. How could she know?
SI kids often get labled ADD.

Also strange is that my son does not fit the perfect SI designation. He is not clumsy and even his therapist says “he is well put together” His SI affects his fine motor and visual realms. I just read and read and watch this kid for what seems to be working. He was labeled dyslexic (his father was dyslexic) but after phonographix (done at home) he is an excellent reader. So the labels can appear and then disappear from what I have seen.
Kids are just so complex.

Lulu,
As I stated above I had the same experience. If I had not taken it upon myself to teach my child phonographix he would still not know how to read.

It makes me so mad because reading recovery costs a FORTUNE to implement and it doesn’t work.

My taxes are so high and we always hear the school has no money for things.

How nice that you were able to get SI therapy at school and you’ve noticed that it has helped. Did you have him evaluated through the school to receive these services?

Just like you, I was just about to start my son with vision therapy and then recently (after learning so much from teachers and educators on this site!), I began to suspect that many of his problems may stem from SI. One thing that makes me suspect this is that he received services for SI (motor planning, propreoceptive problems, tactile defensiveness) when he was a preschooler.

Although he seems to have out-grown any obvious problems he still has mild (slightly beyond normal!) tactile defensiveness.

One reason I never looked into this previously, is I didn’t realize it may possibly be responsible for acdacemic or social problems.

I had to fight to get my son evaluated by OT. Even after the evaluation from the OT she wasn’t going to see him. She didn’t think his problems were that bad. My private OT recently explained that they are under alot of pressure to limit services. This OT has a great reputation in and out of the school.
I convinced her by explaining how bad his writing was and that he seemed to ignore half the page, start at the bottom of the page etc. It wasn’t until after she was working with him for awhile that she saw the deficits clearly. Now she agrees that SI is what it is. She said his strengths hide his weaknesses but he is clearly struggling.

She had him in what she called and SI group. They did obstacle courses, drew patterns and then walked the patterns. His writing and drawing improved dramaticly. He went from drawing barely distinguishable stick figures to drawing lovely pictures of people with grass and clouds etc.

I am working on getting my insurance company to pay for private OTthe specializes on sensory integration. They should do it if the problem is a motor issue. They won’t cover what they call developmental issues. (It’s all just semantics if you ask me)

The private OT thinks interactive metronome is just the thing for him. I have done alot of research on it and I agree. We will start IM in 2 weeks.

I also bought a textbook on SI OT. I truely believe that such things should be followed up with at home.
I have decided to drop all academics for the summer and focus on remediation of deficits.

What is the point of teaching academics until you treat the underlying problem that makes the academics so difficult? He gets enough of that in school and not enough OT from my stand point.

The textbook I ordered is Sensory Integration Theory and Practice by Fisher et al.

It isn’t for someone who doesn’t like to read textbooks. I am such a nerd.

I also ordered The Out of Sync Child which from what I understand is more readable.

Thank you for articulating my concern so well… that is exactly what prompted my concern and this thread to begin with. The need to choose your remediation wisely and in the right order — so you can minimize the toll all of these interventions take on your child. Thanks!

Thanks for the name of that book!!!! :-)

I was just about to ask you for that!!!

I have no problem reading through textbooks either. And have read numerous medical textbooks, journals, medical research websites, etc… while trying to help my other child. Unfortunately, I haven’t had a break in the “worry” department. If it’s not one child it’s another!

Thanks for your help and description of the therapy. That’s very interesting. My son’s printing is probably at a Kindergarten level so that may help me get some OT intervention.

Thanks again for your help Linda!

Some instruments used in the dx of Autism. The Childhood Autism Rating Scale (CARS), the Autism Behavior Checklist (ABC), the E-2, the DSM-IV, the Autism diagnostic observation scale (ADOS), The Autism Diagnostic interview (ADI), the Guillium Autism Rating Scale (GARS), and there is one for Aspergers specifically but I forget its name. The important thing is though they do not use just 1 checklist or test to dx. Usaully a child is given an IQ test, achievement tests, 1 or 2 of the above, the Vineland adaptive behavior scale (or the child behavior checklist), speech language eval, and others based on sx’s. Even if you get a multiple of these it could be hard to dx the child. For example my son scored postively on the CARS, ABC, and E-2. He has a normal IQ, scored well on parts of the vineland, and although has some speech difficulty has areas of strength there also. His dx is PDD-NOS because although he meets enough of the criteria in the DSM-IV, scored a 32 on the CARS, everyone who see’s him says he is too smart and to affectionatte to meet the dx of Autism. It is helpful to know he meets a significant amount of the criteria. His neuropsych did up an excellent report outlining his strengths and weaknesses and provided outstanding suggestions to help with remediation. I dont think the label is as important as knowing the strengths and weaknesses and getting possible suggestions for remediation.