PDD-there is hope

Lisa,

Thanks for sharing. It is marvelous how far your son has come.

When I read your description of your son when he was younger, it reminded me of what I know of autism. What is the difference between PDD and autism?

Beth

Beth thanks for sharing in my pride of my sons success. To answer your question about the difference between PDD and Autism is complicated. I will try and explain my understanding as best I can. Austism is believed to be a spectrum disorder with sx’s ranging from mild to severe. According to the DSM IV there are 5 groups of Pervasive Developmental Disorders (PDD). They are Kanner Autism (or classic Autism as some people know it) which most people are familiar with. Rett’s disoder (which affects primarily girls). Childhood Disintegrative Disorder (regression of skills in 1 or more skills area after a period of normal development following 2 years of apparantly normal development). Aspergers syndrome (some liken this to high functioning autism) different from Autism in their is no speech delay. PDD-NOS (refered to short hand as PDD) also known as atypical autism. In Kanners autism the child meets the criteria of Autism according to the DSM, in PDD-NOS the child has subclinical sx’s, does not meet age of onset, or does not meet enough of the criteria to meet the dx of one of the other labels. The problem is in how these labels are applied. Some providers over identify, some under identify, you might get one dx from one provider but another from someone else. In my sons case he meets 7 of 12 of the DSM criteria, age of onset was noted proir to age 1—some would label him Austic some not. The problem lies in that he is “high functioning”, his IQ is in the normal range, he has speech/language skills there fore given the PDD label. His behavior can be very Austic at times but people say he is not Austic he is PDD others will say you know PDD kids are just like Austic kids. There is such confusion out there I dont think even the experts know. Hope I did not confuse you.

Lisa,

What interventions do you think are most responsible for the big changes in your PDD son?

Helen

Some experts believe the continium actually includes on the milder end those with CAPD, ADHD, and dyslexia—this may explain while Little Lulu’s nueropsych came to this conclusion. For example my family in participating in a multiplex (more then 1 affected member) study of individuals with a dx on the austic spectrum. My boys are dx’d with: oldest- ADD, inattentive type, CAPD, and dyslexia; the youngest is dx’d with PDD-NOS. As you can see only 1 has an official PDD label, we were told by the people conducting the study they considered CAPD, ADD, and Dyslexia to be milder varients so we qualified for the study. My oldest son is very social so I know he does not fit PDD as it is known. What is interesting is the boys do share some traits such as sound sensativity, poor reading and splelling skills, and a strenght in math. But the oldest rights very nicely, the youngest does not. The oldest draws in 3D, the youngest does not, they are very alike but also very different. I find the whole study of LD very interesting will be interesting to see where we are even 10 years from now.

I find the whole right brain theory-with add and dyslexia on the autism spectrum closer to “normal’ midrange- fascinating

“Right brained children living in a left brained world” gave me the clearest picture of my son ever. It just FIT him and we as a family also fit the Sowell ideas of family members who are engineers, mathematicians, accountants, etc.

My son’s psychologist told me at one appointment to research Aspergers and see what I thought. I researched and thought “NO” but understand why it was broached -and also admit, before age 6, one definitely couldve made a case for aspergers or PDD. As he approaches 11, its hard to even see the remnants.

We have soooo much to learn-like you said, 10 years will be interesting and maybe our boys’ boys will have an easier go of it!

Classifying CAPD, ADD, dyslexia (you’ve pretty much covered most of the learning disabilities right there) as a form of autism together with totally noncommuicative headbanging children strikes me as broadening the scope of people on the autism spectrum disorder so as to encompass well over 50% of the population. This makes PDD incredibly unhelpful as a diagnosis—how would you go about remediating a condition, which, if defined as broadly as suggested, would in fact be normal? Child has poor spelling? Oh, she’s on the autism spectrum. Child can’t memorize math facts? Oh, he’s on the autism spectrum. And so on for poor handwriting, articulation problems, etc.

PDD sounds like it was an appropriate dx for your child and probably helpful for getting appropriate treatment. But it is an absolutely detrimental dx for kids who don’t have it because whatever you call it—PDD, autism—it is seen by anyone who will count in your kid’s life as a severe lifetime disorder that perhaps only with super-Herculean efforts and perhaps the grace of God could perhaps be overcome so that the child might, just possibly, have some semblance of a normal life. And most won’t see that second part, and are more likely to have the view that they don’t need to try that hard to remediate because in the end it’s not really possible.

Now, if they wanted to say all these various conditions are neurological disorders, I have no problem with that. They are and everyone recognizes “neurological disorders” as a very general category and that more information is needed to pinpoint exactly what the issue is. In contrast, autism spectrum is seen as a very specific category and people form a very specific a priori picture of what the problems are before they even meet the child in question. Classifying CAPD, dyslexia etc. as part of the autism spectrum is like saying all autoimmune diseases fall on the cancer spectrum. Misleading and unhelpful.

I did not say I agreed with this broad definition just was trying to explain why there is so much confusion out there. Nowhere in my post did I say I agree with this broad a definition because although they may have minor overlaps, they are different. By two boys although they have similarities for the most part are as different as night and day. I do agree that they all have a nuerological base but even the location of this nuerological deficit can not be pinned down to one location.

Am relieved you do not subscribe to broad definition. Continue to be disturbed so-called experts out there are still pushing it.

I think thats what the research is saying. Some people are left brained, some people are odd because theyre VERY left brained, and some people are schizophrenic. Yes, we have to draw lines as to where shizophrenia begins and oddness ends.. Right brain progression/spectrum is the same way.

I listened to a speaker from IN University’s autism center who said that aspergers as a separate diagnosis was being seriously reconsidered. The thought was to simply call it ‘mild autism’ because there were parents wanting the ‘aspergers’ dx -these children are often seen as brilliant and people were actually flocking to certain accomodating local practioners to get this designer dx(horrifying thought for those who struggle with autism, isnt it?)

I think looking at the whole picture so as to determine where better to draw that line as to who needs services and who is simply ‘odd’ is why this type of research is so valuable. Not to take away services but to pinpoint who most needs the help

I agree and that is why I agreed to be part of the research. I have a very interesting family history with various learning issues so thought we would be a good group to look at. I have 4 brothers and 2 sisters. I have 1 brother and 1 sister who are diagnosed as “retarded”, the term used when they were dx’d back in the 60’s. Looking back at it my brother very much reminds me of the classic Kanner Autism type. Both my brother and sister have seizures and also thyroid disease. I have another brother who was labeled “a slow learner”, turns out he was having absent seizures, this was not discovered until he had a full blown one. My dad is dyslexic, along with my grandfather and one of my other brothers. My mom and dad raised 7 children with no more then a high school diploma between them. All those special needs children and they are stilled married 40+ years later. All of us are employed one way or the other maybe not glorious careers but all of us are making a contribution to society. I don’t think one should ever consider the door closed just harder to walk through.

Helen, I think the biggest help to him was being consistant. We worked on his IEP as a team and used it throughout his entire day not just school. At his IEP meeting we had the parents, his daycare provider, speech therapist, DD coordinator, teachers, ect. We set the goals together and worked on them together. We communicatted daily on what we found worked and what did not. For his speech it was helpful to use videos. He loved to watch the same video over and over until he had the vocabulary down. We did not discourage his echolia but tried to use it to communicatte with him. We used visual cues and a lot of touch. We redirected behavior when we could and let some behavior slide realizing it was a coping mechanism. When he would hand flap we would gently take his hands and lead him in a song involving hand play. This behavior disappeared very quickly when he learned he had other things to do with his hands. As he learned to communicatte more the behaviors decreased especially the aggresiveness. I have always used an educational approach with my son we have not tried meds, elimination diets, IM, Nueronet, or the like.

Or a at least not the very expensive all-day every-day therapies. These have to be reserved for those who really need them. When our neuropsych decided on PDD, I got right on the net and came up empty-handed on this describing my child. The neuro suggested a private school for kids with disabilities ($20,000+ tuition) and suggested that the advocate they had on staff would have a high chance of getting him in and having the school district pay (for a fee from us of course). This for a second grader with a solid B average and some As who scored at or above grade level on all the achievement tests. My naivete was in for a shock when I visited the school and discovered it was filled with kids who couldn’t read, write, or do math. When I later asked the neuro what would be the point of putting him in there he smoothly replied they don’t make schools that exactly address your kid’s set of problems. Following the neuro’s advice would have been a very costly mistake for my child, the taxpayers, and the kids who really need that kind of help. I sometimes wonder how many affluent families with mild LD kids that this testing outfit managed this kind of expensive intervention for courtesy of the taxpayer—it had, I found out later, a reputation for a lot of success in this area.

Or a at least not the very expensive all-day every-day therapies. These have to be reserved for those who really need them. When our neuropsych decided on PDD, I got right on the net and came up empty-handed on this describing my child. The neuro suggested a private school for kids with disabilities ($20,000+ tuition) and suggested that the advocate they had on staff would have a high chance of getting him in and having the school district pay (for a fee from us of course). This for a second grader with a solid B average and some As who scored at or above grade level on all the achievement tests. My naivete was in for a shock when I visited the school and discovered it was filled with kids who couldn’t read, write, or do math. When I later asked the neuro what would be the point of putting him in there he smoothly replied they don’t make schools that exactly address your kid’s set of problems. Following the neuro’s advice would have been a very costly mistake for my child, the taxpayers, and the kids who really need that kind of help. I sometimes wonder how many affluent families with mild LD kids that this testing outfit managed this kind of expensive intervention for courtesy of the taxpayer—it had, I found out later, a reputation for a lot of success in this area.

I agree with you on this point also. I felt even with my sons sx’s that he did not need this type of treatment. I felt it best to have some control over what was used with him. My husband and I both feel that those types of services should be reserved for the children who really trully need it. Our PDD son was easy to get along with because he is the guiet withdrawn type, he was never demanding. We felt the parents of kids with severe behavior issues and poor cognitive functioning needed the intense therapy more then our son did. We assembled our own team and this worked out well and did not cost me or the tax payers lots of money.

My son has an autism DX. he has been in early intervention since he was 2 1/2 and he is now 5. The progress he has made is nothing short of amazing and makes me believe that if we all keep up the good work that anything is possible in his future. I have never asked for anything as expensive as ABA for him. Fortunately, he has been able to progress well in the autism and communication handicapped classes that he has attended. Also, I have the good fortune to be able to provide him with supplimental activities and experiences myself. Lastly, we have been very lucky in that we have another son who is the best play therapist anyone could hope for. Unfortunately, the program manager of the special ed school seems intent on denying my child a third year of special ed preschool. It’s as if she’s decided that he’s progressed enough. There are still so many challenges he needs help with and I find it terrifying that these administrators want to “throw him in the deep end” when the best hope we have for his future is the early intervention program. Throwing him in the deep end is a phrase they actually used at his IEP meeting.

Great going Rose, congratulations to you and your son on his nice progress. My son has progressed so much it is hard for some to believe it is the same child. I even got a call from his teacher this afternon and she commented on how much he has even changed in the time she knew him. When he started her class last year he was very dependent, had no reading skills, no work habits, ect. Now he reads and sounds out words! He sets himself to work and gets things done without assistance this includes reading and writing his own assignments. Like I said never consider the door closed just harder to walk through. Keep up the good work!

I thought aspergers, nvld et al. were right brain dysfunctions (along with executive function problems and ADD) And I believe my ds has a right brain glitch based on my understanding of these disorders.

But his biggest problem is in reading/spelling and some believe he is dyslexic - reputed to be a left brain dysfunction no?

Now, I suppose its possible he’s got wires crossed in both sides of his brain - but that thought is way too depressing, plus then I would expect him to be much less functional . Or maybe I’m thinking too simplistically.

I thought aspergers, nvld et al. were right brain dysfunctions (along with executive function problems and ADD) And I believe my ds has a right brain glitch based on my understanding of these disorders.

But his biggest problem is in reading/spelling and some believe he is dyslexic - reputed to be a left brain dysfunction no?

Now, I suppose its possible he’s got wires crossed in both sides of his brain - but that thought is way too depressing, plus then I would expect him to be much less functional . Or maybe I’m thinking too simplistically.