A little background. DS is 8. When he was 5 we got him tested and the diagnosis came back as a receptive expressive language delay. He still has trouble intiating and sustaining conversations, due to which he has trouble making friends. He is a bright child who does well in math, writes beautifully but does not like reading because comprehension is still a struggle for him. We thought we should get him tested again because of his social difficulties. He never does well in testing situations. At the dr.’s office he would not focus and some of the picture matching questions were a disaster; he would not even look at the questions and would point to pictures randomly. At other times he would give totally incorrect answers to questions that I know he has answered before and then would look at me and start smiling. The dr. decided that the testing would not be accurate and through observation (he approached other parents and tried talking to them and stood a little too close to them), the dr. said he has PDD-NOS. My question is can such a diagnosis be given based only on observing the child. If not, what do we do when he does not do well at such diagnostic tests to figure out what is going on with him.
Thanks.
ak
PDD
Warning—I am a bit biased against the PDD-NOS diagnosis. A psychologist friend of mine once referred to it as a “garbage diagnosis” that is given to kids who have two of anything. All in all, I don’t feel it is very helpful in giving direction on where to focus remediation efforts. I get the feeling you are not comfortable with it as well. if that is correct, I definitely would not pass this diagnosis along to the school—they will read it as PDD-autistic spectrum and if this is not the case may very well take the view that they are relieved from actually trying to attempt remediation because there is not much that can be expected from them in this regard for autistic kids. I would really concentrate on going full bore on the language problems with a good language therapist. If social interaction is a problem, you could supplement individual language therapy with group pragmatic language sessions.
Re: PDD diagnosis through observation
Thanks for the information. My biggest issue right now is to find the right school for him. We just moved and the new private school he is in right now seems unwilling to put in the extra work that is needed to help him, although they had assured us that they would. So we are about to pull him out and are looking for another school. We even looked at a special school that specializes in working with children with PDD. We visited the school and observed a classroom. Our gut feeling was that the school wasn’t for him. To us, he is making progress everyday and is doing well academically…it is the social aspect that he needs help with. My feeling is that he needs some ABA therapy to teach him appropriate behaviors in social settings and a small private school where the teacher is considerate and loving. Anyone with experience with ABA to help with social deficits? Group pragmatic language therapy sounds good too. I shall look into it.
Thanks.
ak
Re: PDD diagnosis through observation
PDD-NOS like autism and Asperger’s (as well as many “behavioral” conditions, ie ADHD) can ONLY be diagnosed by observation. There remain no medical tests for it.
Whether your dr. is qulified to make the call of PDD-NOS is a seperate matter.
Have you screened your child for lead, mercury and other toxic metals yet? Very, very common in children on all points of the autism Spectrum.
Re: PDD diagnosis through observation
http://www.childbrain.com/pddassess.html (the quiz)
http://www.childbrain.com/pddassess2.html (the scoring)
This is an interesting quiz that may help to familiarize you with the basic characteristics of PDD. Obviously not a diagnostic tool, but a step along in the direction of the three component symptoms and the scoring system.
I found this on the internet. It basically says that ideally a team of specialists ought to evaluate a child for PDD. I certainly wouldn’t take this diagnosis as the last word. I would say it is his impression. Have you read descriptions of PDD-NOS? Do they fit your child?
I also wondered why you were in the room when he was being tested. I had some problems having my son accurately evaluated initially because he was three and didn’t transition well. When he was evaluated at 7, I was not there. If your son is being coy, that certainly is an easy solution.
I once had a pediatrician wonder, based on my son’s behavior (didn’t look at him, spoke in monotone), whether he had Asbergers. We went to a neurologist, who spent more time with him, who said no. Now, four years later, it is clear that the neurologist was correct.
Beth
Here is what I cut and pasted.
How do I know if this is the correct diagnosis for my child? What if it is a mistake? What if different evaluations have resulted in different diagnoses?
If you have doubts about whether the diagnosis given fits your child, you should probably get a second opinion. Ideally children with PDD should be evaluated by a team which includes a developmental pediatrician, a speech and language pathologist, an audiologist, and a psychologist and/or psychiatrist. A great deal of time (several hours) should be spent by the team getting to know your child well through observing and interacting with him as well as through talking with you about his development, what he is like at home and his responses to different situations.
If you have gone through a thorough diagnostic process and you still feel it may not be the right diagnosis, you might want to consider pursuing the recommendations in terms of intervention and school, for these interventions are generally helpful to all children with language problems, even if you disagree with the label. You do not have to use or accept any label you are not comfortable with for your child, but the interventions will most likely be beneficial. After getting a second opinion it may be most helpful to put the diagnostic issue aside for a year or so, and get a follow-up evaluation after a year of schooling to see what makes sense at that point, or to drop this issue altogether except where you can use a label to your child’s advantage to get certain school services, for example.
Families often get conflicting advice from well meaning people; grandparents may be saying “He’s finedon’t let them tell you there is anything wrong with your child”, the pediatrician may be saying “Don’t worry, Einstein didn’t talk until he was 5”. Sometimes, but not always, fathers tend to minimize problems and mothers tend to be the worriers. It is helpful to remind oneself and extended family that you don’t need to all agree on what the problem is, you just have to agree on what should be done to help the child, including getting him to school. It can sometimes be helpful to bring the extended family to clinic appointments.
Again, if professionals give different specific diagnoses within this general category (e.g., one says
“Asperger’s”; another says “PDD”; and another says “Autism”), that could very likely be due to different uses of these terms rather than disagreement about your child’s challenges and needs. While it would be helpful if everyone used these terms in the same way, the most valuable information to get from evaluations really is the recommendations regarding intervention / schooling, rather than the specific label or diagnostic category within PDD.