Newbie here... Confused! Help!

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Registered: 12-13-2006
Newbie here... Confused! Help!
10
Thu, 07-05-2007 - 9:08pm

Let me introduce myself..Roberta, mom to three, Connor 3 (pdd-nos dx in 9/06), and twins, Ayla and Will 14 mths.

Connor was dx back in Sept 06. I 'knew' something was up when he wasn't talking, answering to his name, playing with empty water bottles (unscrewing and screwing the cap on all day) tantruming, and no pointing. He loved swings (and would tantrum if you took him off) rocks occasionally, and was always seeking sensory input. Thank god I didn't listen to my loved ones who tried to reassure me that "he's a boy, boys develop slower". He was receiving EI for about 9 months before we got the official dx.

The Neuro told us he was just on the edge of the spectrum and was very mildly affected. Once we had the dx and DS started to get more services, within 6 months he was a different kid! His receptive language has always been excellent, but expressive was significantly delayed, within those 6 months he was using more words than I could count! He just started preschool (pdd program) since he turned 3 in May. In regards to his language, he's doing awesome! We've had some behavioral issues in the past few months, ie. throwing, pulling hair, meltdowns over wanting to have ALL the balloons at the mall or a party, or having to have ALL the balls when we walk by them in Target, and bolting!

At school he is somewhat aggressive and does pull hair and hit. He also tries to 'get out' of the class by opening the door over and over again. He constantly throws items in the trash (anything he sees) and he is overcome by feelings of dumping when he sees a water bottle, or drink, etc. We have to lock the bathroom doors at home so that he doesn't squeeze out the entire tube of toothpaste or diaper cream, and we cannot leave anything like that around unless we want it all over him and the house.

Here's why I'm confused: We had a consult with a highly recommended child pyschologist who specializes in autism and developmental delays. She has written books, teaches at Harvard Medical, and everyone I've spoken to in the Autism community speaks VERY highly of her. During the visit she did some floor time play with Connor, he had already been upset by a fountain that we passed walking into her office. He wanted to 'go in' (thinking it was a pool) and became extremely upset when I told him it wasn't a pool and couldn't go in. She was able to work him through the meltdown and redirect him. He noticed bubbles in the room and ran for them immediatley. I told her her to watch out as he was going to dump them. He became very upset when he couldn't hold the bottle himself (to dump I'm sure). She was able to redirect him again, but he came back to the bubbles and HAVING to HAVE them. During his 'happy moments', he was friendly, giving hugs, smiling, laughing, talking, sharing, etc...

So in her opinion she doesn't see him as being truly "autistic" as he is so connected, and so social. She said if she hadn't known about his issues, she'd say he was a typical 3 yr old with a language delay. She definitley agreed with the diagnosis when it was given, but feels it should be closely monitored as he has improved so dramatically in such a short time. She feels more that he is suffering from OCD and his compulsions and obsesions are driving the behaviors. The balloons or balls for example, she thinks that his body is telling him he HAS to have them, and he can't 'relax' until he satisfies his need. She thinks his obsessions and compulsions are ruling him and not allowing him to focus or sit still, and that he's constantly feeling like he's jumping out of his skin and thus the reason he latches on to hair, (looking for calming mechanisms). The urge to dump and/or squeeze overpowers him and he can't relax until he can again, satisfy his needs.

What is the difference between Autism and OCD? The symptoms seem so closely related. Some days I totally agree with her, and then others I don't. I'm not convinced that he isn't in fact autistic. Today, he bolted from me so quick that he made it to the street before I could get to him. Thank god there weren't any cars. He has a VERY limited diet, has meltdowns, screams sporadically, still rocks here and there, constantly looking for sensory input by crashing or squeezing/pulling hair, is non compliant, does not seem to understand consquences, has no sense of fear, and still meltdowns over wanting ALL the balloons.

I'm soooo sorry for the LONG message... I'm just looking for input/suggestions/thoughts from people who can relate.

Thanks for reading!

Roberta

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Registered: 11-28-2006
Thu, 07-05-2007 - 9:48pm

Well here's my two cents, and please since I am still learning here, if I'm wrong pls someone jump in lol.

You have Autism, and then the co-morbids that come with Autism. The co-morbids are the things that are treated, not the Autism itself. OCD is a commen co-morbid of Autism.

IMO you do describe a child that has all the traits. Frankly I get frustrated when Docs say "The child has traits but is not on the spectrum" WTH is that kinda answer?

Anyway, I would just go with my gut as you have known him as his mother, his whole 3 yrs 24/7 and she has known him how long? Not long at all when you compare it to how you know him.

I would just continue getting services for him as needed and maybe get him re-evaluated by another person. The thing about her observation, is there was no real testing done with him right? Just an observation? Only the best of doctors wouldn't go with an observation alone.... they would also do testing and then decide.

At least that is how I would feel with her response.

I hope I helped :)

Lainie

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Registered: 03-20-2003
Thu, 07-05-2007 - 10:22pm

hey Roberta,


thanks for posting.

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Registered: 04-07-2003
Thu, 07-05-2007 - 10:33pm

I'm sure you'll get much more knowledgeable answers than mine, but while OCD is often a component of autism, it is not the same. When you add in your ds other developmental issues like language delays, rocking, etc., it sounds to me as if it's not just OCD but more likely the PDD that was originally diagnosed.

My own experience is that several doctors dismissed my concerns and/or flat out told me my kids didn't have autism for various reasons, especially social reasons. After testing, however, my kids were both diagnosed with Asperger's. Because my kids are more social (not skilled socially, but more social than "typical" AS) and because my kids' symptoms aren't as pronounced as other kids, the docs assumed my kids had no problems before testing proved otherwise. I think if your child doesn't exhibit the "proper" symptoms, some docs just dismiss the dx.

Oh, also, doctors don't even agree on whether PDD is an autism spectrum disorder or not. Some just consider it a developmental delay rather than autism, so perhaps that's why the psychologist is saying it's not autism? Personally, from everything I've read, it seems to me that it's just as much autism as all the rest of the autism spectrum disorders.

I'm sorry the doc is making you 2nd-guess yourself, but I agree with the PP that you're the mom and you know best. Trust your gut instinct!

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Registered: 03-26-2003
Thu, 07-05-2007 - 10:57pm

Roberta,

Here is my 2 cents for what it is worth. Kids with HF- ASD can be out going and connected. They just don't do it well, kwim? Your son may have seemed connected with her but on the other hand it sounds like he had some significant social challenges. ALSO, I would wonder if the need to do things was a true obsession as in OCD of if it was more autistic sticky thinking combined with autistic language processing and not understanding why he can't do something he wants to do.

With the proper intervention he was able to gain enough oskills to pass as an NT 3 yo for a short appointment. I would be reluctant to take away a dx this quickly particularly if it may affect his ability to recieve services. You are going to be lucky to get similar or sufficient services for him with just a OCD dx.

I would just tell the doc you are reluctant to remove the dx this quickly. You would like to see where he is in a year or 2 and re-evaluate from there. Lots of kids with ASD dx'es can make huge fast progress but later as more challenges of life come along they begin showing their signs again.

My dd was like that. By 1st grade we thought she should be un-dx'ed. Our wise ped said she wouldn't remove the dx until Cait was able to go an entire year without supports. We tried weaning the supports and within 6 months we knew for sure that Cait was definitely still on the spectrum.

Renee

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Registered: 07-30-2003
Thu, 07-05-2007 - 11:33pm

My son who will be 5 next month was given a pdd-nos dx soon after his third birthday. After living with all the rituals and arcane behavior which ruled our lives I made an appt with a ped psychiatrist after a particularly BAD day. He was diagnosed with OCD tendencies and anxiety issues. He was put on Zoloft (anxiety) and Risperdal (OCD). I cannot even begin to tell you the difference in the quality of his/our lives. It was like someone turned on the light for him.
Before he could not concentrate in Pre-K because he was constantly affected by everything going on around him. He had the attention span of a goldfish. Now he participates like the other kids, does music time, story time, and his vocabulary (sentence wise) has just exploded. The thing that everyone keeps saying to me is: It is like another child. For the first time in a long time I feel like there just may be a light in that long, dark tunnel. He is so much happier as well. He is also so much more like any other kid. The other day he started saying everything that his older brothers were saying and drove them up the wall. Then one of them pushed him down and I heard him yell "I am telling Mommy."
It was such a normal thing to occur between brothers that I was elated!

Not everything is perfect though. He still does some of his rituals that he did before like walking up wheelchair ramps and following lines but not to the extreme like he did before. I honestly cannot count the number of people who have come up to me and mentioned how different he has seemed lately.

I hope this helps!

I just want to add that I tried many things before the RX. He has several therapists (conventional and unconventional) and we have tried a couple of different diets (not the CF or GF though) and nothing worked for him at all. Even his chiropractor who does not vax her child and is a "natural" type thinks that he should stay on the meds because that is what is working for him and us.

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Registered: 12-13-2006
Fri, 07-06-2007 - 8:17am

Thx to everyone for their replies! Just to clear things up, the doctor has been very involved with Connor's progress and services. She is the founder of the organization that was servicing Connor before he started school so she has been involved in his care, consulted in regards to his behaviors, has seen many videos and read many reports in the last 8 months. The actual appointment however was the first time she physically met him. The evaulation was conducted over a two hour period in which time she was able to see first hand the issues we deal with on a regular basis.

I do think her report was an accurate measure of Connor and where he's at, and she didn't specifically say he 'doesn't' have autism, but that he doesn't really fit the true picture as she sees it when it comes to being truly autistic. I really trust and respect her as a specialist considering all the work and studies she's done, as well as the way she was able to re-direct Connor by utilizing her own method called Replays (she's written a book about this technique).

All that said however, I agree that it is ultimatley my 'gut' that I have to go with. There are some days where he does so well, and then others where I say there are definite signs.

I forgot to add that Connor was officially diagnosed after a series of tests through Childrens Hosptial in Boston by a pediatric Neurologist. She is the one who said that he is very mildly affected, but nevertheless affected. She also said that with proper support and help she envisioned Connor doing very well. Now both her and the pyschologist have suggested trying meds to help control his impulsivness and lack of ability to focus. Thoughts on this?

Thanks!

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Registered: 06-25-2003
Fri, 07-06-2007 - 10:49am

Hi Roberta and welcome,


I cannot tell you the difference between Autism and OCD. It is a very valid questions. I know some kids on this board are officially DXed with OCD in addition to other things. In my eperience, most kids with an ASD have some (or a lot of) OCD traits. It seems to come with the territory.


As to this doctor you saw: She may be very highly qualified, but she did not spend a lot of time with your son or see him in his natural environment. Therefore she gave you her impressions based on a tiny slice of him, and not all of him. Her impressions of that slice were probably accurate, but who can say what she would conclude had seen more of the picture?


Connor is very young. he still has a LOT of developing to do, and his DX may -quite validly change as he gets older and gains skills.


if you think the PDDNOS DX is helping your family to receive services for him, then I would stick with it for now. Things may change when it is time for kindergarten, but in the meantime, I would grab as much help and services as possible while he is young (as especially as they are helping) and worry about the 'official" DX a little later, when he brain is growing a a slower pace.


I hope this helps a little.


Please feel free to stick around, chime in on any topics and post as many questions s you need.


-Paula


-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 12-13-2006
Fri, 07-06-2007 - 11:42am
I have to say that I'm so glad I found this board. I spent alot of time on the expecting boards when I was pregnant and always enjoyed listening to others experiences and learning from others examples. It's comforting to know there's a place to vent, ask questions, or just SCREAM if necessary.... So THANKS to all!!
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Registered: 01-29-2004
Fri, 07-06-2007 - 11:51am

Hi,
I always hear OCD and ADHD being diagnosed for an autistic child. My own son was diagnosed such. But I did not see the ADHD symptoms at home when my house was calm. I did see when the noise level was high. Yes, he did have the attitude of doing his way, going to place B in the same path as always, balloons cannot pop and on and on. Life was very difficult at age 3,4, got a little better at 5 and so on. His OCD symptons are starting to vanish (kind of) at age 10. If he is not hungry, then I CAN reason with him. Otherwise I remind him that he is not able to perform because he is hungry. So 3 is young and the most difficult age. Sending him to preschool was a big mistake. I think he can get social skills even otherwise.

take care,
Anandhi

iVillage Member
Registered: 07-30-2003
Fri, 07-06-2007 - 3:08pm
Well if you read my reply you know that meds were the only thing to help my son with OCD. They aren't for everyone but they made our lives much more livable and cut out a lot of the impulsive rituals.