15 year old son, new mild PDD-NOS

iVillage Member
Registered: 01-15-2010
15 year old son, new mild PDD-NOS
5
Fri, 01-15-2010 - 12:43am

Just joining. We learned in December that our son (15) may have PDD-NOS. I say "may" because based on what I have read & seen, he does not have many of the symptoms of other kids. He does not have any friends, but he does know a lot of people at school, and seems to get along with them, he just doesn't form relationships. He does not have repetitive behaviors, does OK with eye contact, is able to converse with strangers. But he does sometime speak too loud, and does not really get when something he says is inappropriate.


Bottom line is that we are struggling to firgure out what to do, if anything. He is seeing a psychiatrist weekly (who told us he likely had PDD-NOS), but we do not see much in the way of change. We have looked into some programs, like RDI, but are concerned that it may be more than he needs, and may make him feel like there is something wrong with him. We want to help him, but are unsure what kind of help makes sense for him. We'd be interested in hearing from anyone who recognizes themselves or their child in this.


Thanks!


iVillage Member
Registered: 02-26-2010
Mon, 03-01-2010 - 8:48am

Andrea


I am new here and looking through some post and came across your response.....PERFECT!


I have been looking for the words to explain my 4yr and my frustration with his PDD/NOS dx and you said it best "is capabale for learning but not at the rate of a typical child his age" (pretty close).


Ugghhh that's what drives me crazy..first his 4!!! Come one doesnt that count for anything and secondly he gets things just not as quickly as others his age and really I believe 50% is by choice! No one comments on the things he does that is not typical of a 4yr old but more like a 6-8year old.


Anyway just wanted to say I enjoyed reading your post!


Thanks for the words! :)

iVillage Member
Registered: 04-21-2008
Thu, 01-21-2010 - 10:34am
Welcome to the board!

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iVillage Member
Registered: 01-15-2010
Fri, 01-15-2010 - 5:29pm

Thanks for the feedback & thoughts, it is very helpful.


In a weird world way, I was driving home last night with my son, and heard an extended story on NPR about Temple Grandin. It gave us an opportunity to talk about autism & what it means. My son does not see himself in any of this.


I spoke to a therapist yesterday who specializes in AS kids, and he said that it can be challenging to make a lot of progress 1-on-1, and suggested that some kind of group work can be more useful, as you point out. We are looking for something local (SF Bay Area). Your point about parental vs. external coaching is spot on, as our son takes our "help" as being critical vs. constructive. Which is one of the concerns about RDI. We are willing to do what is needed, but we also want it to be effective, and not have our son feel like every interaction we have with him is taken as a critique or a correction.


One of our big challenges is understanding which part of his behavior is normal 15-year old and which may be a reflection of his PDD-NOS. I think your advice to learn more is important, so we can do some self-assessment.


Other comments or experience is welcome.

iVillage Member
Registered: 06-25-2005
Fri, 01-15-2010 - 2:48pm

My 15yo dd, 11yo ds, and dh all have Asperger's Syndrome (AS). I also have two neurotypical (NT) children, 13yo ds and 6yo dd (tho' they have some slight sensory issues and ADHD).

When I first heard about AS and PDD, I wasn't sure it applied to my kids because their symptoms didn't match the stereotypical checklists. As I hung out here, though, I realized how much my kids' behaviors matched those that I saw in other children on this board. Later my kids were tested by a team of doctors at Children's Hospital, and they were diagnosed (dx) with Asperger's.

My dh was actually very glad to learn that he had AS. It gave him some understanding as to why he struggled in some areas. We've also been very open with our kids about their dx and the strengths they have associated with that dx.

There are a number of famous people who are suspected to have AS or PDD http://www.disabled-world.com/artman/publish/article_2086.shtml. Even if it's mostly speculation, it made my kids feel better to understand that having an AS or PDD dx doesn't make them deficit. It just gives them different strengths than others might have.

My ds speech therapist just this week introduced us to Steven Gutstein's book "Relationship Development Intervention with Children, Adolescents and Adults." Her recommendation was that we do it with all of our children since all children can benefit from improved relationship skills.

I also think that going with your gut instinct about what your child needs is important. RDI may not be necessary for your ds, but maybe there are other groups or activities he could participate in that would provide him benefit.

It sounds like your psych is familiar with autism, if he was able to pick up on the PDD-NOS. Do you think your psych is sufficiently equipped to provide support for your ds PDD, or do you think there's another psychologist who could help provide behavioral supports?

I've learned a LOT from dozens of books I've looked at from the library, but I've also discovered that as much as I know and may try to implement with my kids, they seem to do better hearing it from someone else, particularly when we've worked on behavior modification. It seems that everything we've done with the therapist is stuff I've tried at home before, but somehow they "get it" better when it's not mom suggesting the change.

We've also discovered that ds volume control has gotten better since he began working with a speech therapist (for his halted speech). Before if we told ds that he needed to tone down (or increase) his volume, he had a hard time believing us and responding to our request. Now that ds has worked on volume with the speech therapist, if we tell ds that he needs to use volume #2, he understands and is responsive.

BTW, we sometimes forget to look this far down the message board, so you may want to post a shout out in the top section, too, so people know to look down here at your post.

iVillage Member
Registered: 02-28-2008
Fri, 01-15-2010 - 10:17am

Welcome to the board. I hope that you can find some answers here, and perhaps some support for what you must be going thru.

My children are younger than yours by a bit, but I find it helpful to think of myself as 'a coach' when dealing with my children and their ASD issues.

ASD children can learn behavior changes, but they learn them more slowly than a typical child would. Also, your explanations of 'why' a certain behavior needs to happen or change has to make sense. Logic and rational thought are your friends. It can work to just say 'that's the rule' too although you might find that results in an over application of the rule, lol. The behaviors that neurotypical people find natural have to be learned by repetition by ASD kids.

The good news is that with effort, your child can progress and learn to fit in better. But it is an effort for both of you.

HTH

Andrea, mom to

Graham
Miles
Anson

Andrea, mom to

Graham
Miles
Anson