diagnosis/more than i bargained for, HELP NEEDED

>>We are talking about autism here, right?<<

No, Aspergers is not autism.
One of my very good friends has two boys with
aspergers. One has graduated high school and is
getting training in very technical computer languages.
His little brother is in middle school.
The boys have a limited social life but they do have
friends who share their interests.

There are a lot of good support sites on the web
for aspergers.
My favorite search engine is www.google.com

good luck.

Anne

I see the neuropsychs have renamed the former garbage diagnosis PDD (NOS)—which stands for not other specified— to atypical PDD. It means he does not fit the PDD diagnosis, but has some of the symptoms. Of course many people have some of the symptoms. I would want to have it confirmed by a pediatric neurologist or psychiatrist—in other words an MD who, unlike a neuropsychologist is qualified to give this diagnosis. Call for an appointment as soon as possible—the MDs are bound to have long waiting lists. You will need to do this anyway because of the possible seizure disorder.

A psychologist friend once told me that if a kid has two of anything, it is common to give the PDD (NOS) diagnosis. Hence, the reason other psychs refer to it as a garbage diagnosis. It is possible that your child’s problems are fully explained by a medical condition (e.g. seizure disorder) together with an auditory processing disorder, visual processing disorder, or simply dyslexia. And the stress of dealing with all this in a school situation could of course cause anxiety/depression—in fact only the most exceptional child with these disorders would not have that. This does not necessarily all add up to PDD and, further, slapping a PDD label on the kid could actually stand in the way of getting the proper remediation.

In fact, given your total shock, I would be surprised if it did add up to PDD. Parents of PDD kids should have a very good idea something is really off in their kids by the time they are three or four. It shouldn’t have to be announced to them by an outsider when the child is 9. One more thing—meds do not take care of everything and in fact can make things worse—getting the right meds can be very hit and miss. While you are waiting for an MD appointment, you can scan the PDD, Aspergers sites and honestly assess the question—are the people on these sites describing my child, not in parts but in a way that can explain the whole? Also, post his actual scores from the testing on this site to see what some of those familar with the tests think. Out of curiousity—how did they come to the tactile disorder conclusion? Think of the neuropychs conclusions as just the first step in figuring out your son’s problems, not the answer to what they are.

I have been there and the neuropsych was wrong.

I must agree with skeptic here that the autism spectrum disorders are complicated but most parents suspect that type of disability before a label is applied. Some docs give the dx of PDD-NOS or atypical autism easily giving it to any child who only has 1 or 2 of the sx’s and they may even only be mild. They also give this label though to avoid the “A” word because this is easier to take. For example my son met 7 of the criteria for autism, he also scored postively on the E-2, the ABC, and the CARS yet his dx is PDD-NOS. As he had gotten older his sx’s have improved greatly and he meets less of the criteria so his label stands. I suspected before he was even a year old that something was wrong though. He did not seem to want to be held (did not resist it but did not ask for it), he seemed to be in his own world, he had no eye contact, he loved spinning objects, he had some delayed skills. It took us until he was almost 2 to get anyone to listen, then it was a series of lets see if he will out grow it. He received services starting at age 2 though due to hearing loss and as he was worked with it was realized something else was going on. We were persitant and kept following through because we went with how we felt. I guess my point is you know your child and if you feel this does not fit I would look for a second opinion.

seems called for here- this “diagnosis” has so many parts and pieces that it sounds like your evaluator was reading the manuals and numbers and covering bases as opposed to really looking at your child.

Letters after a name do not an expert make.

Were this my child I would be making another appt. with someone else.

Skeptic and Lisa M. are quite correct.

BTW- were there useful recommendations and information in this tossed salad of a diagnosis? Idon’t blame you for being overwhelmed.

Robin

Diagnoses are overwhelming — even when I started to do intensive research and we began some really useful interventions for my NLD daughter at age 7.5 (now almost 12) it took me a LONG time to get used to and accept the reality of her situation.

But while some parents dislike “labels” I found the “named” diagnoses (NLD, ADD, executive function disorder, dysgraphia) very helpful because I could finally study and understand and provide my daughter with appropriate support and help — AND help all the people around her do the same. At the same time, the labels do not define our kids. For instance, NLD is a big box (as is Aspergers) and not every kid fits every piece of the “classic” profile.

You may need a second opinion, but it is apparently not good practice to repeat a lot of the psych testing within a certain time period (experts can confirm or explain this more), so I suspect you would not find someone else to re-test your kid. YOu may want to find more than one other professional to interpret the results you already have.

Doesn’t hurt to post them on the parenting a child with LD board here - several folks can help with interpretation.

Hang in there. It’s always better to know what is going on than to not know! Definitely start reading up and checking on the web sites for info — you know your kid best.

Thank you all for your responses! I guess I’m just wondering if I’m in denial or if the dr. is wrong. When I look at the symptoms I see a few, but they say Aspergers is definite deficits in social and communication. We have told her (the dr) that social is his STRENGTH. I can see a few things to be concerned about, but I chalked them up to the anxiety and the fact that he is shy. His mom and dad are not outgoing people either, so I assumed this is normal for him. All three of our kids are low key. This part of the dx is just not sitting right with me.

I TOTALLY agree with the dyslexia. I was completely expecting this dx and I can live with it, I know what to do for that. And I agree with Barbara, I (personally) am comfortable with the labels, I need to have it summed up for me. That way I can focus. When we have little bits and pieces (when they wont label) it is too much for me to handle and I don’t know where to start. The doctor said not to get caught up in the labels. I need it for my own peace of mind.

I agree with the anxiety/depression. His mood is most definitely being compromised by his failures in school, he threatened to kill himself in November of last year he says because of school. Seizures I am willing to buy too, given our family history.

Yesterday was the verbal report. The written is coming in the mail. When I get it I will post the scores for everyone’s opinion, I look forward to that. And I think I will go with the second opinion of the tests already done.

thank you, very good advice! I will post the actual scores when I get them in the mail. yesterday was only a verbal report. I never had that feeling that something was wrong with social or communication. It all started when he began school. I will never forget what that kindergarten and 1st grade teachers made me do to him. She told me he wasnt trying and I had to do this and that to get him motivated to learn. I cry everytime I think of what I put him through because they didnt see the disabilities. I’m afraid we are in the same boat with the Aspergers dx. It just doesn’t fit. The tactile she says is dyspraxia.

Wow, I appreciate your honesty. PDD is considered an autism spectrum diagnosis. I have “seen” private psychs. or neuropsychs, give autism diagnosis to children who only exhibit autism in two areas: thought and, and, and, maybe egocentricity. They are too liberal in applying a diagnosis of this kind to children who are just a little bit odd.

If social skills are a strength, I just don’t know where this atypical PDD, Aspergers is coming from other than he might have two of something—visual processing and auditory processing (which in most cases would result in dyslexia)and possibly a third, dyspraxia. All of these “labels” I would find useful—they point to a specific condition and specific remediation, accomodation strategies. Same with a seizure disorder, which would point to a medical solution.

The label I found very unhelpful in the dx was the atypical PDD and I am very puzzled that it was raised (other than it appears to be a fashionable diagnosis among neuropyschs). Does he have language difficulties, for example with syntax and vocabulary? That would be a logical result of auditory processing difficulties and it troubles me that, if this is the case, it was perhaps seized on to make the PDD dx.

A PDD dx in itself does not point to any specific remediation or accomodation strategies and is incredibly unhelpful (unless as someone pointed out it’s being used as a euphemism for autism, which definitely does not appear to be your son’s case). Further, it is unbelievably anxiety provoking in parents who had no suspicion (and in fact had no reasonto suspect) something as drastic as autism for nine long years. When I got this diagnosis for my 8 year old son, not having the benefit of this board, I barely slept for nearly three months. I would get up in the middle of the night to read books on autism and ponder for hours what I was missing and how I could be such an incompetent parent that I didn’t spot his PDD-ness. Relief only came when I got him into a proper pediatric psychiatrist who confirmed no PDD. That was double confirmed two months later with a neurologist who actually said he couldn’t believe how off-base the neuropsych was.

So, please, get your sleep. Post the scores here and go to someone else for interpretation if you can. Make an appointment now with a pediatric neuropsych for the seizure possibility,who can also weigh in on this PDD thing. (I am sorry if my annoyance at this is coming through too strongly—but I truly feel this erroneous dx victimized my whole family and really wish the neuropsych profession had guidelines instructing them to cool it on this diagnosis in older children.)

You know, I simply don’t place much faith in labels. On one hand, I like them because it allows me to do the research; if I didn’t have a label, it would be hard to find information. On the other hand, labels don’t do anything except provide a way of classifying symptoms. But symptoms don’t exist in a pure form -there are all kinds of variables and interactions and layers. So at best, labels and categories are awkward and people don’t fit neatly into them.

The bigger issue is: What kind of help does he need? What can be done to help him in school? It sure seems to me that, without labels, someone can, by looking at those test results, make recommendations as to ways he best learns.

People just keep tinkering with labels. Every year it seems there’s a pet label. For awhile, it seemed every kid I sent for testing came back with a PDD label. Now it’s autistic spectrum for kids with the very same presentation. In a way, I don’t fault the pros. They’re responding to new bits of research as they’re understanding them.

I still think it comes back to seeing what’s getting in the way of the child’s learning and to finding the best way to overcome those obstacles. You don’t really need a label to do that.

I have one son DX with autistic spectrum disorder. I have another that I suspect may have a lot in common with your son. Siblings of autistic children often have traits that are only identified because there is already a DX in the family. The neurologist may have actually been very astute in his observation of your son but don’t panic. He’s still the same child he was yesterday. Remember that the brain is capable of every possible variation of strengths and weaknesses. Also remember that children’s strengths and weaknesses don’t always fall neatly into one diagnostic catagory and that those are the one’s who will often have as many different DX as specialists they visit. I know a lot of autistic children and they are all very different, being different may be the only thing they all have in common. My autistic 4 1/2 year old is learning to read. My undiagnosed 5 1/2 year old child isn’t even close to learning to read. My autistic child didn’t start calling me mommy until he was 3 years old. My undiagnosed child was able to express his desire to be a paleantologist at 3 years old. My autistic child didn’t even acknowledge that I was leaving when I dropped him off when he started school. My undiagnosed child cried every day for weeks after starting school. Very different children with very different strengths and weaknesses that need to be observed to help them live up to their potential. My children are not genetically predisposed to conformity. So what? Think of all the brilliant ideas that come from people who think differently. I have a learning disability that made school very difficult for me academically and socially. I was fine socially when I was in an evironment I felt comfortable in. With accomodations I graduated from university in the top 10% of my class. What determines the boundaries between disability, eccentricity and genius? I think it has a lot to do with the environment children are raised in… what is done with their strengths and weaknesses… what is reinforced… what is adapted to… what is circumvented. Go ahead and use the label to get your child’s support system to observe his unique strengths and weaknesses. Or do whatever you feel will help you best take care your child. After all, you are the most important person in his life.

Pangamic acid or Vitamin B-17 I think is suppused to be helpful in treating autism. The brain of an autistic person looks quite different that one who isn’t. Pangamic acid is also helpful in treating alcoholism

I agree with Joan.

I think diagnosis that are very specific that point to a very specific intervention are helpful.
These boiler plate throw everything into the pot diagnoses are a joke. Way too subjective.

That is not science.

not sure what you mean. could you elaborate on this?

Thank you for reminding me that he is still the same wonderful boy that he was the day before. When I was driving home from the appointment, I found myself thinking about him differently and how would I deal with this boy when it turns out he’s actually not the boy I thought I knew. But you are right. I know him and a diagnosis will not change who he really is. Thanks again!

I believe that is what she (the doctor) was saying was the pervasive part, the visual the auditory then the dyspraxia. I just don’t understand this part of if, though. Could you shed some more light on your first paragraph?

You are so right! I am just kicking myself as to how I missed this. I have been so tuned in to him (I thought). I though I knew him. I’m just sick about this. I scheduled another appointment to talk about this with her educational consultant to see if she can help me sort this out. He does have difficulty with syntax (written) but verbally okay. Vocabulary is above average. He is very verbal.

I’m so glad that you said that your diagnosis was confirmed as being wrong. Our next step is the pediatric psychiatrist to take care of the anxiety/depression. So hopefully he will help me confirm the same thing, that this is just not possible.

I am sorry that you went through the same agony of believing that you missed such an obvious thing about your child. This is just eating me up. But, your comments have truly helped me, if that is of any comfort. Thank you again. I will post scores when I have them.

Dyslexia technically means difficulty with reading. It doesn’t explain why the child has difficulty reading. You go to your doctor and say my head hurts he says well mam it appears you have what is known as a headache.

Very helpful!

I also think the same think of ADD. I think this is why it is so overdiagnosed. Lets look at what the initials ADD stand for Attention deficit disorder. HMMM so you go to a psychologist stating your child has trouble paying attention in school and for your $250 you get the brilliant opinion that he has an Attention deficit. It is almost comical. The criteria is soooo subjective.

I am not as familiar with autism but it seems that many kids have symptoms that could be perceived as autistic. Being told your child is autistic is just sticking a label on a group of symptoms. It really doesn’t give you any insight into what is going on. It is also extremely subjective. It is just a label. Especially in your case where what you (the person who truely knows your child best) sees is different from what the person who spent 30 minutes on an evaluation sees.

Insight is very hard to come by. I found some wonderful insights into what is going on in my childs brain through a pediatric OT who specializes in sensory integration issues. I think I just go lucky in a way. I think I got lucky with some of the interventions I have tried as well. It is hard to intervene when the problem isn’t clearly defined.
I am still trying to figure this all out.

The brain is a part of the body that has been carefully studied for many years. Why are these diagnosis so subjective?

Thank you for your very thorough advice and comments. I completely see what you are saying. Much appreciated!

Yes, I understand exactly what you are saying with the symptoms, with these I too would suspect something on the autism spectrum. My son had none of these. He was a very social boy from the start, still is. Very affectionate, still is. Very physically coordinated (he was riding a two-wheeler by his 2nd birthday, no lie) still loves any type of sport, physical activity. In fact I told the doctor that this is where he is finding his successes. Fine motor is what I’m concerned about. He follows us around the house, usually does not prefer to be completely alone, just likes someone to be around. She was concerned about his lack of eye contact and reciprocation. He is a very shy boy around those he does not know. Especially someone who is asking him questions about his areas of failure. With those he knows, you cant stop the mouth.

I will get a second opinion. You all have convinced me that this is the way to go before I get myself all worked up. Thank you so much for your comments and very helpful advice

Thank you. I see what you mean. This is what kind of scares me too, supposedly neuroscience (through the evaluation of a neuropsychologist) is the closest scientific explanation (objective) that you can get to brain functioning. I’m happen to appreciate hard science. Scientific fact, like the results of a blood test or x-ray. The proof is there. You are right, all of this is just way too subjective especially when it’s done in a 30 minute evaluation. Thank you for your most helpful insight.

Lu Lu,

My son tested in the 98% in gross motor skills. He has tremendous difficulty with handwriting due to fine motor issues.
I just found out he has apraxia. He knows what he needs to do but can’t perform the motor functions. This only affects him with fine motor activities. Terrible hanwriting. He is great at the monkey bars and snowboarding. Very strong.

He seeks out proprioceptive stimulus. I read this is related to hyporeactive propioceptive receptors. This is all a part of sensory integration.

I was just reading that many autistic children have sensory integration. Maybe your son’s shyness threw off the diagnosis.

This is good on handwriting. Forget where I got it. www.apraxia-kids.org/topics/thorne. It is an article on graphomotor issues.

If you suspect sensory integration find a pediatric OT that specializes in sensory integration.

The pervasive in PDD means that the child has developmental delay pervasively, that is, in many areas. Many would not go for the PDD label for a child who is good verbally and in social communication. That is what makes your son’s dx so puzzling. However, as I said, it seems it’s fashionable among some neuropsychs to label children who have problems in two areas—for example, visual processing and fine motor skills and possibly auditory processing—to put one dx on to explain it all, thus the PDD label. Which tells you nothing, and the fact that it is also used as gentler way of saying autism doesn’t help. Autism has specific treatments that have proved helpful—but I think they would mostly be a waste of time for child that has one or two problem areas but because of neuropsych fashion have been labelled PDD years after toddlerhood.

I wonder about the auditory processing dx if his vocabulary and oral syntax are fine. (Many children have poor written syntax—just ask any teacher of 9 or even ten or eleven year olds—I would not take this as indicative of much, except perhaps what Victoria on these boards calls dysteachia.) This is something you could test for while waiting for an MD appointment so you could rule it out or in as a problem. You would have to to get him screened for Central Auditory Processing Disorder. That said, there are plenty of children without auditory processing disorder who cannot break the phoenemic code without explicit instruction such as what you get in Reading Reflex. (Interestingly, there are children, like my ds, who have auditory processing disorders and have no problem with the code—perhaps because they did not suffer from dysteachia in learning to read.)

You mentioned eye contact above. This is a biggie among professionals. And yet, not having eye contact with a tester they barely know is not as indicative as everyday eye contact with those they know. (Thinking hard while talking also causes many people who think very visually to look away because it is hard to maintain eye contact at the same time.) Actually, extraordinary powers of eye contact are often associated with sociopathic behavior (e.g. Bill Clinton). But I digress. Total lack of eye contact with anyone would certainly be a marker for PDD, as would a notable lack of empathy and feelings for others. But you say your son is affectionate and is not particularly fond of being alone. Again, I really question this PDD dx for your son.

Clinical neuropsychology is not a hard science; it is a social science. They can give educational and cognitive tests and interpret them—I would consider them competent to point out areas where the child performing below par. But PDD is really more a medical condition, and neuropsychs are definitely not licensed to practice medicine. If a neuropsych suspected it, they would be best off saying nothing but referring the patient to an MD like a neurologist, psychiatrist, or perhaps a developmental pediatrician for further evaluation.

Some tips, when you go to the educational consultant, try not mentioning the PDD dx, at least until after you’ve heard what her take on the scores are (you don’t want to influence her honest opinion with some else’s views.) Another thing, call the neuropsych and get the scores. You don’t need to get them in writing. (In fact they are probably all typed up in summary fashion and that could be faxed to you.) Reports take a lot longer to get because they put in a lot of verbiage about how they saw the child behave etc. You just want the numbers. Also, beware of having a report that says PDD on it—this could prove very detrimental in the future (I’ve experienced this), although in some places it might be helpful for getting services. (But in some cases he could end up with totally unsuitable accomodations with kids he has nothing in common with.) If you want the PDD dropped and the report is going anywhere else, tell the neuropsych—you’re paying, she should do it. These were things my psychologist friend told me when I got this diagnosis and she was so right. (Unfortunately, the PDD misdx was in his records at the psychiatrist and neurologist I went to for second and third opinions.) Stop kicking yourself—I am sure you know your son much better than the neuropsych—on these kinds of things ultimately mothesr usually do know best.

If you go to www.sensoryintergation.com, you will find lots of good info.

My daughter, who has multiple LDs, had alot of the same characteristics as the PDD/Asbargers’ children. She outgrew them all. WHen I went to a seminar with a friend who has an autistic son, I kept thinking “she used to do that, etc.” also, there is sensory intergration international which can help you find a SI OT in your area. The book “Out of Sync Child” can shed alot of light on this. I believe the author is Jeanne Ayers.