My Intro and a few questions

EdenEC

New Member
Hello, I just found this site today. My name is Eden, I am the mother of a 12 yr old boy who was diagnosed at 4 with Pervasive Developmental Disorder (PDD)-not otherwise specified/Autism. At this point our biggest issue is defiance. We don't have an actual ODD diagnosis but it fits. We get alot of not otherwise specified when we ask our son to do anything. He refuses to go to school often. Refuses to do his work, refuses to cooperate in simple things, often even in the fun things. We are frustrated and don't know where to turn as far as helping our son. I am trying to learn more about ODD at this point, hoping that there is something we can do.

Thanks for hearing me out.
Eden
 

AnnieO

Shooting from the Hip
Welcome Eden! I'm glad you found us... Though I'm sorry you had to.

From what I have learned over the past few years, an ODD diagnosis tends to be a catchall - there are other things that cause the behaviors that indicate ODD. Kids on the autism spectrum really do exhibit these behaviors!

I have a 13-y/o with Pervasive Developmental Disorder (PDD), not otherwise specified - though the doctor says Fetal Alcohol, not autism spectrum. Regardless, it manifests in all kinds of ways.

Has he given you any reasons for his refusals? Sometimes it can be something so little as being overwhelmed! And, being autistic, he may not be able to tell you. So... It's worth an ask.

Has he been on any medications? And you said he was diagnosis'd at 4... What were the signs, etc. that led to you having him checked out?

One last thing... There is a book a lot of us on the site have found EXTREMELY useful... It's called The Explosive Child, by Ross Greene. ...Now I will say, not everything in that book works for everyone... But, for instance, it's helped me prioritize - which makes MY life easier... And Pervasive Developmental Disorder (PDD) kids pick up on stress.

:hugs: and WELCOME!
 

keista

New Member
Hello and welcome.

I wouldn't spend too much time chasing an ODD diagnosis. While it is considered valid, it more describes a set of behaviors and is usually driven by something else. The way you approach ODD caused by Pervasive Developmental Disorder (PDD)-not otherwise specified, is different than the way you would approach ODD caused by anxiety, which is different from the way you would approach ODD caused by depression, etc. I would focus more on the Pervasive Developmental Disorder (PDD)-not otherwise specified/Autism.

Does he get/have any therapies interventions either at school or at home? If not, then it's time to look into it. If so, it's time to start changing strategies. in my opinion the biggest reason we get defiance from our Autism Spectrum Disorders (ASD) kids is because they are perseverating. They are stuck on an activity or thought, so transitioning to something else, even something fun, becomes extremely difficult. When forced to transition, they don't do so successfully, because they are stuck on the previous activity/thought, so instead they refuse to transition and it appears as defiance.

In addition, at 12, puberty is beginning to set in, so there's a natural, biological component at work here which makes things even more difficult.

Others will be by to add their .02

Welcome again. Stick around, you've found a great place for support, guidance and insights.
 

BusynMember

Well-Known Member
Is he getting any interventions for autism? Usually Pervasive Developmental Disorder (PDD) kids rebel out of frustration. Even if they have a good vocabulary, they have trouble expressing themselves and often do not know how to make friends and are terribly lonely. I have a son on the spectrum.

Like the others, I'm not a big fan of the diagnosis ODD. It doesn't explain WHY the child is defiant. Often it is just part of the bigger disorder which, in this case, is Autism Spectrum Disorders (ASD).
 

Morningglory

New Member
Hi EdenEC, I also have a child with Aspergers / Pervasive Developmental Disorder (PDD). Altho my son is 16. He was xd when he was 7 or 8. my son didn't like school or to transition from one activity to another either. I can't say he was very verbal about his dislike but you could see it in his movements and his coping reactions. Once the diagnosis and after many hrs / weeks/ months of research and talking to prof.s my son needed desperately to have a strict schedule. This wasn't for my benefit, this was for his. His schedule and the way things are done never change. clear down to the way he puts his socks on. If the schedule changes say for vacations or changing schools ( moving from middle to high school) you can visibly see he gets extreme discomfort. your child is not just going through learning how his disorder works for him, but he is also going through puberty( I can assume.) How structured is his schedule? not saying your son is like mine, but he may need to know exactly what to do at what time and where, all the time. this can take several days or weeks of watching his day and helping him structure it. I'm not saying all autistic kids need this, but before continuing on a path of ODD research give the strict schedule thing a try ( if you haven't already).

Sorry your feeling frustrated. I hope you find something to relieve you and your son's stress soon.
 

InsaneCdn

Well-Known Member
Ignore the ODD diagnosis. Not helpful, for the most part.
Pervasive Developmental Disorder (PDD)-not otherwise specified/Autism... which one is it? has that ever been nailed down?

We're not "on the spectrum" in our household, but have some traits... and have found that the biggest single key to dealing with behavior is to get a really solid understanding of where the kid is coming from. WHY does he behave that way? WHEN? (time of day, certain environments, overwhelmed, tired, etc.) WHAT is the kid thinking... how does he think, what is his logic (yes, there will be some thought processes, but you won't find that out when he's already over the top) What unmet needs are driving him crazy? This is all HUGE.

Anything on the autism spectrum needs intensive early intervention - has he had any of that?
 

BusynMember

Well-Known Member
In the US, Pervasive Developmental Disorder (PDD)-not otherwise specified *is* atypical autism. Pervasive Developmental Disorder (PDD) alone is pretty much autistic spectrum. They get pretty much the same interventions depending upon the severity of the disability.

I just took Sonic to a neuropsychologist. He told me (and I've been told this before) that very soon Aspergers, Pervasive Developmental Disorder (PDD)-not otherwise specified and classical autism are going to be called Autistic Spectrum Disorder in the DSM. Pervasive Developmental Disorder (PDD)/autism---pervasive developmental disorder.

Just a bit of trivia :)
 

susiestar

Roll With It
Welcome to our group. (((((hugs))))) It is super frustrating and hard to cope with all of what we face with our kiddos. You are not alone anymore - we understand!!! Even those ugly thoughts that no one wants but happen to us all - the ones of running away and not coming back or whatever. We have had them and you are not alone with them.

in my opinion ODD is a waste of time. Most of the time a diagnosis tells you what is going on and gives some idea of why or how to treat it. ODD does tell you that you have a set of behaviors, but gives NO,ZIP, ZILCH, ZERO, NADA help on how to treat it or stop it. The only use i have found for the diagnosis is that it is another set of letters to help make the ins co cough up $$ for treatment. That isn't even always true though. I just know that it did help one of the ins co's we had over the years approve more therapy - we only got ten sessions per "problem" meaning for each diagnosis my son could see a therapist ten times. Period. Fat lot of good just ten sessions did, but we managed to get enough diagnosis's to cover therapy for the year by including all the things like ODD that the docs could dream up to apply.

anyway, you will get a LOT farther figuring out how to help the Pervasive Developmental Disorder (PDD) than the ODD. Many of the kids with Pervasive Developmental Disorder (PDD) are incredibly anxious. Their worlds just are scary and unless the same thing happens at the same time every day they don't cope well. So setting a schedule and sticking to it as much as possible is a good thing. Some of us have found that cutting all gluten and dairy out of our kids diets make a huge change. Not all of us, my kids did not benefit from this at all, but many have seen very dramatic improvements. It would be worth a six week trial, in my opinion. And there are a LOT of products out there now that were not ten - fifteen yrs ago when we tried them. Plus a lot more good recipes, etc.... A company called Tofutti makes a cream cheese that truly is better than reg cream cheese and their ice cream sandwiches are awesome! My youngest (not a difficult child) was allergic to dairy for his first five years so we found these. I used to have to fight with my difficult child to keep him out of them because they really are that good!!

Try reading "The Explosive Child" by Ross Greene. It is really helpful, or has been for most of us. Also start creating a Parent Report - a document that has ALL the info on your difficult child in one binder. The link in my signature should take you to the description of the report and the outline for it. IT was devised by the warrior moms here before I joined and is one of the most powerful tools you will ever have to help your child.

Also take a look at what is going on at school that he doesn't want to go. What could be changed to help him? WIth a Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis he is eligible for an IEP to make his education suit his needs and we can help you learn more about that if you don't have one or don't have a good one. It isn't much fun for YOU, but often the "fun" things like festivals, fairs, special outings, etc... are so fraught with anxiety for a person with Pervasive Developmental Disorder (PDD) that they truly are not fun. Many of us had to taper holiday celebrations etc.... way back in order to have our kids have any enjoyment and not blow up.

Another awesome book that might help is What Your Explosive Child is Trying to Tell You. I forget the author, which is awful because he stops by here now and again and is a really great guy.

I hope some of this helps!
 
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