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Parenting the Child with an Autism Spectrum Disorder or Related Disorders This board is a place for parents and caregivers of children with an Autism Spectrum disorder or related disorders such as ADHD, NVLD, PDD-NOS, or Sensory Integration Dysfunction. Come share your daily triumphs and struggles, give and receive support

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Old 09-15-2009, 03:05 PM   #1 (permalink)
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completely confused, what happens now?

I have posted before regarding my son a 24wk preemie who is now Gavin 2.5 years old and has sensory intergration issues and "autistic characteristics". Well 2wks ago we had a brain MRI and today the neurologist said that due the mild brain damage which usually would result in CP which Gavin does not have, the damage is probably going to manifest as some sort of disorder on the autism spectrum. She then mentioned that a year or so from now she will be able to really tell me because the DSM is changing and SID is not a diagnosis right now and maybe Gavin will have Aspergers. The doctor said that Aspergers or Autism it does not matter it is all the same to her. Okay so now what are we suppose to do? I am confused because when I read the list for symptoms and signs for Autism Gavin does not meet the requirements. Then for Aspergers he is language delayed which is most likely caused by a multiple of factors such as prematurity and hospitalizations/ illnesses and surgeries during the first 1.5 years but Aspergers says no language delay. I do not know I guess I don't have to figure out everything at once but I feel totally lost and confused.

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Old 09-15-2009, 04:04 PM   #2 (permalink)
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Try PDD-NOS. That diagnosis is for kids that don't quite fit the Autism or the Asperger's diagnosis.
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Old 09-15-2009, 04:19 PM   #3 (permalink)
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Hi Roxie. I find what you were told to be interesting...I will elaborate shortly. Generally children without a language delay are classified as Asperger's and children who have a language delay are classified with autism. I do not know how much background knowledge you have of the subject so please forgive me if I write things that you are familiar with already. The "spectrum" goes from PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified, which means that the child does not have enough characteristics to be classified as Asperger's/HFA/autism). This is generally thought of as the "mildest" form, which is a joke in itself in my opinion because if you ask any mother of a child wit it she will definitely tell you that there is nothing mild about it! Then in the middle of the "spectrum" you have the Asperger's and HFA and to the right you have the more severe profound autistic children. I hope that this is making some sense.

My son has been with HFA by one doctor and Asperger's by another. He has also been classified as having CP-NOS as either a result of him lacking oxygen at birth (he was not breathing), or when he was 10 months old he had severe seizures and stopped breathing. We really do not have a lot of answers. There is some controversy as to whether or not Asperger's and HFA are the same thing. I was also told that it really did not matter WHAT we called it...autistic is autistic and they are either autistic or they are not. Whatever... I was also told that there is no more SID that it is part of the autism.

I know that you must be lost and confused. It is very stressful and you feel so hopeless and do not even know where to begin in the beginning. Have they started an intervention for him? If not you can make a few phone calls and get the ball rolling yourself. In most states there is a state funded early intervention program that helps to get you set up with therapies. We did not even have to have a diagnosis, just told them that the doc suspected autism. What matters the most is getting help as soon as possible. I cannot even begin to tell you how much the therapies that we started this past year have helped here (DS is 3). We are still in the process of a "diagnosis" even though we have had one from several peds, a ped neuro, and the local ASA. Last week we went to the Autism Clinic for a full psychiatric eval. What I am trying to say is that these things take a lot of time sometimes, but there ARE things that you can do in the meantime. My DS has really done well with PT (they do OT and SIT too), and social skills and play hterapy. A lot of people swear by the ABA but so far we have not been able to afford that too.

Great big hugs are being sent your way. I have rambled a bit but I hope that I have said something that helps. The ladies here are wonderful.
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Old 09-15-2009, 04:20 PM   #4 (permalink)
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Monchhichi is right...I forgot to add that a lot of doctor's give the PDD-NOS first and go from there...
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Old 09-15-2009, 05:17 PM   #5 (permalink)
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Quote:
Originally Posted by bayoubaby1 View Post
Monchhichi is right...I forgot to add that a lot of doctor's give the PDD-NOS first and go from there...
This is where we started because son did not talk until past three and then he had many speach problems. Now he is diagnosed with asperger's and there is no doubt in my mind that is what it always was but due to other things including hearing problems until 18 months he had language delays too.

Sue

It doesn't matter except for getting services. PDD NOS should get you there.
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Old 09-15-2009, 06:43 PM   #6 (permalink)
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Ive seen your post on the SN board. My ds went to Progressive Steps in Valencia too so you might be near me.

Your ds is still so young that no one knows what his future will hold. Right now he should still get early intervention and then qualify for spec ed preschool. Depending on your area there are Special Ed classes for different levels and also General Ed with assistance. I know of 1 class that has spec ed for physical needs as well.

After he turns 3 you would need a qualifying dx to continue services with Regional Center. You would need the autism dx then to get behavioral therapy. Sadly, with all the budget cuts, services are being cut to a minimum and it's getting tough to get services approved.

Its so scary that we don't know what the future holds. I get frustrated too when our kids get an autism or PDD dx when they just fall under an "unknown" umbrella of deveopmental delays. I think for now try to get a specialist who will give him the autism dx so he can get what he needs thru the schools when he turns 3.

Hang in there.
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Old 09-15-2009, 07:50 PM   #7 (permalink)
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I totally agree with Lisa - go for the actual 299 dx (which is full blown autism)...that way there is NO doubt on the services you will get now and later. The regional center down south offers more in therapy after the age of 3...so, make sure to get it!

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Old 09-15-2009, 08:01 PM   #8 (permalink)
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I agree with the other ladies, as hard as it is to swallow any of this, it really doesn't matter which diagnosis on the spectrum fits him best. Try to get a regular "autism" diagnosis if it is for sure that he is on the spectrum. I mean, if he doesn't fit the spectrum at all, then I'm not saying get him an autism diagnosis. But, if he IS on the spectrum, it doesn't so much matter where right now. Try to push for the regular autism diagnosis to get the services he needs. He is so young it just might be fuzzy so do what you can to get the most services b/c you don't want to guess wrong thinking it is milder than it really is. KWIM? Am I making sense? I'm tired, so it is likely that I am talking in circles! LOL!
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Old 09-15-2009, 08:03 PM   #9 (permalink)
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I definitely echo that any DX right now to get you into services is the way to go. The ladies here are awesome and full of knowledge.
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Old 09-16-2009, 05:47 AM   #10 (permalink)
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What I would be worried about is mislabeling him with autism because he has some symptomology. It kind of sounds like the dr. is using the spectrum as a catch-all because he/she doesn't really have a clear diagnosis. Are you satisfied with saying he is on the spectrum or do you feel like there is more to discover? Perhaps developmental delay is enough for now, unless you are seeking specific services. Do you mind sharing what characteristics of autism your ds displays?
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