Aa
recent dx- what's next?
My daughter went to see a licensed social worker at a local children's hospital and was dx: pdd-nos, than she followed up with 3 different appointments and on all 3 of them she got the dx: asperger syndrome, are these 2 the same, and what did she get both, help I am confused, she was dx. with c.plasy her whole life, and now they say, R/O C.plasy, what treatments do I need to look for her, I am new to this dx, any suggestions would be very helpful..
Wow. I think she has a case against the doc who diagnosed her kid with CP to begin with for 11 years. I would keep away from the licensed social workers - anyone involved with the school as much as possible for the testing (advice from our school psychologists who had a PhD). You need to find yourself some really good people to work with.
11 years. What can I say!
Surely to get a diagnosis of cerebal palsy she must also have gross motor problems and probably dyspraxia??
As your daughter sounds like she needs alot of specialist help, especially to try to catch up on all those years when she was incorrectly diagnosised, I would recommend finding a solicitor with has experience in special educational law. Now would be a very good time to get private reports and get all her needs and the therapies to meet them included in her IEP. As there may be a number of them (needs and therapies) you may have a very good case for getting into a private school (because a state school won't have those facilities) but still funded by the state. If you send a message to SueNYC, who posts in the Aspergers forum, she maybe able to give you some more advice. You must be so mad.
Surely to get a diagnosis of cerebal palsy she must also have gross motor problems and probably dyspraxia??
As your daughter sounds like she needs alot of specialist help, especially to try to catch up on all those years when she was incorrectly diagnosised, I would recommend finding a solicitor with has experience in special educational law. Now would be a very good time to get private reports and get all her needs and the therapies to meet them included in her IEP. As there may be a number of them (needs and therapies) you may have a very good case for getting into a private school (because a state school won't have those facilities) but still funded by the state. If you send a message to SueNYC, who posts in the Aspergers forum, she maybe able to give you some more advice. You must be so mad.
she is now dx with asperger, she seen the social worker, licensed counselor, and child phyco., they said she always had autism ,never c. palsy, she was mis dx in the past, now waht, well, i called alot of different palces seeking for help, and 1 university gives free aba therapy, but it is a 3 hour drive, so i don't know, i see a new ped at the end of the month, cause when i told the old ped the news she copied an attitude from hell, so i got a new doc that works for a speciality clinic which has autism docs there, i had to wait 3 weeks for an appointment but it is worth it, i am getting rdi, behavior thearpy, art therapy, paly therapy, and so on, at a local training center, i don't care where she gets it, and she is getting ot and speech at hte regular hospital where the new ped works, she we are excited, she made to 2 news over the weekend, but her social skills suck,any suggestions? I am using flash clue cards, but i just don't know how much of them she is understanding of them ,she looks at them , but they don't kick in...and the sensory issues and potty and sleeping and meltdowns still ***** also.. the new peds nurse told me on the phone that's all part of the autism, and she will get better help with that in her new treatment plan, i got myself a new notebook, i finally am getting a treatment plan after 11 years of waiting, heck yeah, so she has autsim, and that's ok with us, cause at least we know what to treat and how to treat it..
Okay~ First and foremost....GO TO A PEDIATRIC NEUROLOGIST OR A PSYCHOLOGIST THAT SPECIALIZES IN AUTISM TESTING. Anyone else basically is there for "opinion and experience" purposes. These are the two categories of specialties where you can get a medical diagnosis which you will need for insurance purposes and various other things as well.
As for PDD-NOS; this basically means that your child shows the signs of Autism but does not meet one of the "four categories/criteria" of Autism to be classified as full blown Autistic. There are four basic categories involved in Autism testing and the person being tested HAS TO BE BELOW SCORING in ALL FOUR areas in order to have the Autism diagnosis. So say, your child has scored below average in 3 of 4 areas, this would be grounds for classification of PDD-NOS. Meaning, your child is on the Autism Spectrum of disorders, but does not meet all four scored areas for Autism. Also, and this is from my personal experience; a specialist will give the PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) if they feel the child is too young to be given the formal Autism Diagnosis and further testings is recommended in a year for formal diagnosis and classification. All in all though, it is much the same as Autism, it is considered an Autism Spectrum Disorder, and much of the treatment is the same....The ONLY difference being is that they feel that person may possibly "grow out of it" to a certain degree or they "may grow INTO it" (Autism) more to a certain degree. So to some specialist and researchers...PDD-NOS can possibly be "cured" because it is not seen as so severe as Autism. However, it can be used as a "temporary" diagnosis as well to get treatment going until further developement proves otherwise.
I will tell you this...My 3yr old was at first diagnosed with PDD-NOS from a Pyschologist, but at the same time, I was having my son see a speech therapist, an OT, and school psychologists for IEP testing for school...All of whom felt that diagnosis was completely wrong and that my son was in fact either more Asperbers or Autistic. I too felt this was wrong from what I deal with daily, so I got a second opinon and found out that Autism was the true diagnosis. Whomever you decide to go to, MAKE SURE they do hands on testing with your child and not just observation because the way a child with Autism interacts with you, the one he knows and understands, is waaaaaaaaay different then how they act/understand most other people. Hands on testing is key to a correct diagnosis in my opinion and this is coming form experience with both sides of it. I am not sure how the Social Worker was able to give a diagnosis but I strongly encourage you to take your child to a specialist that I had mentioned earlier in this message as they are trained specifically in this area and experienced as well. There are too many disorders on the spectrum and so many variations that you need to have the proper specialist do the diagnosis. Hope this all helps rahter then confuses...Please do not hesitate to contact me about any concerns or questions on this more.
*Misty
As for PDD-NOS; this basically means that your child shows the signs of Autism but does not meet one of the "four categories/criteria" of Autism to be classified as full blown Autistic. There are four basic categories involved in Autism testing and the person being tested HAS TO BE BELOW SCORING in ALL FOUR areas in order to have the Autism diagnosis. So say, your child has scored below average in 3 of 4 areas, this would be grounds for classification of PDD-NOS. Meaning, your child is on the Autism Spectrum of disorders, but does not meet all four scored areas for Autism. Also, and this is from my personal experience; a specialist will give the PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) if they feel the child is too young to be given the formal Autism Diagnosis and further testings is recommended in a year for formal diagnosis and classification. All in all though, it is much the same as Autism, it is considered an Autism Spectrum Disorder, and much of the treatment is the same....The ONLY difference being is that they feel that person may possibly "grow out of it" to a certain degree or they "may grow INTO it" (Autism) more to a certain degree. So to some specialist and researchers...PDD-NOS can possibly be "cured" because it is not seen as so severe as Autism. However, it can be used as a "temporary" diagnosis as well to get treatment going until further developement proves otherwise.
I will tell you this...My 3yr old was at first diagnosed with PDD-NOS from a Pyschologist, but at the same time, I was having my son see a speech therapist, an OT, and school psychologists for IEP testing for school...All of whom felt that diagnosis was completely wrong and that my son was in fact either more Asperbers or Autistic. I too felt this was wrong from what I deal with daily, so I got a second opinon and found out that Autism was the true diagnosis. Whomever you decide to go to, MAKE SURE they do hands on testing with your child and not just observation because the way a child with Autism interacts with you, the one he knows and understands, is waaaaaaaaay different then how they act/understand most other people. Hands on testing is key to a correct diagnosis in my opinion and this is coming form experience with both sides of it. I am not sure how the Social Worker was able to give a diagnosis but I strongly encourage you to take your child to a specialist that I had mentioned earlier in this message as they are trained specifically in this area and experienced as well. There are too many disorders on the spectrum and so many variations that you need to have the proper specialist do the diagnosis. Hope this all helps rahter then confuses...Please do not hesitate to contact me about any concerns or questions on this more.
*Misty
Sorry, I didn't understand all of your post because of the medical jargon which is different depending on the country you are in.
I presume she still has the diagnosis of cerebal palsy?
You don't mention how old she is or what professionals are involved with her at the moment.
My understand of PDD - NOS is that it is a pervasive developmental delay, but not one that ticks all the boxes for a diagnosis such as aspergers or autism. But I think I am right in saying that it is 'still on the spectrum' from an autistic point of view. So there is something going on that puts her in the category of autistic traits/behaviours/learning styles etc etc, but there may be one aspect that doesn't fit the criteria for a different diagnosis.
Having said that she has gone on to also get a diagnosis of Aspergers. So that would indicate to me that her speech is okay. Because if she had speech delay or language problems or disordered speech or semantic/pragmatic disorder then that again would bring her under a diagnosis of autism or PDD-Nos.
If you think of these diagnosis as a rainbow, and the rainbow means 'autistic spectrum disorder', then depending on where your child is on the rainbow will decide on what diagnosis she receives.
There is every possibility that her diagnosis can change as she develops. There are many people who flutuate between diagnosis.
It is also possible to have 'traits' (or bits) of some conditions or disorders, but not enough of any one of them to get a positive diagnosis of that condition/disorder. So something might have aspects of learning difficulty, bi-polar, autism/aspergers/pdd-nos/touretts/OCD etc etc. Sort of like a fruit salad made up of different fruits instead of a fruit salad make up of only banana for example.
I too am not sure about a social worker being able to diagnose.
It would be worth getting a specialist opinion because you need to have more specific advice so that your daughter's needs are supported. For example cerebal palsy as a diagnosis is more of a physical disability (correct me if I am wrong), but that with support they should be able to 'learn' in a similar way to other children. With a spectrum disorder that may not be the case and she may need a specialist setting, not because she is 'retarded', but because they learn in a totally different way. Some children with Aspergers and PDD-nos can go to a mainstream school and learn and cope reasonably well (although it does have its difficulties). Most children outside of that group would benefit from being in a school that has expertise and experience of autism.
So you need to know where your daughter is regarding the autism side so you can plan her schooling.
So I would recommend getting a second opinion from a good paediatrician/child psychologist who has experience in autism.
Once you have that I would find out what your legal rights are regarding schooling, then you will know what they should provide by law.
I presume she still has the diagnosis of cerebal palsy?
You don't mention how old she is or what professionals are involved with her at the moment.
My understand of PDD - NOS is that it is a pervasive developmental delay, but not one that ticks all the boxes for a diagnosis such as aspergers or autism. But I think I am right in saying that it is 'still on the spectrum' from an autistic point of view. So there is something going on that puts her in the category of autistic traits/behaviours/learning styles etc etc, but there may be one aspect that doesn't fit the criteria for a different diagnosis.
Having said that she has gone on to also get a diagnosis of Aspergers. So that would indicate to me that her speech is okay. Because if she had speech delay or language problems or disordered speech or semantic/pragmatic disorder then that again would bring her under a diagnosis of autism or PDD-Nos.
If you think of these diagnosis as a rainbow, and the rainbow means 'autistic spectrum disorder', then depending on where your child is on the rainbow will decide on what diagnosis she receives.
There is every possibility that her diagnosis can change as she develops. There are many people who flutuate between diagnosis.
It is also possible to have 'traits' (or bits) of some conditions or disorders, but not enough of any one of them to get a positive diagnosis of that condition/disorder. So something might have aspects of learning difficulty, bi-polar, autism/aspergers/pdd-nos/touretts/OCD etc etc. Sort of like a fruit salad made up of different fruits instead of a fruit salad make up of only banana for example.
I too am not sure about a social worker being able to diagnose.
It would be worth getting a specialist opinion because you need to have more specific advice so that your daughter's needs are supported. For example cerebal palsy as a diagnosis is more of a physical disability (correct me if I am wrong), but that with support they should be able to 'learn' in a similar way to other children. With a spectrum disorder that may not be the case and she may need a specialist setting, not because she is 'retarded', but because they learn in a totally different way. Some children with Aspergers and PDD-nos can go to a mainstream school and learn and cope reasonably well (although it does have its difficulties). Most children outside of that group would benefit from being in a school that has expertise and experience of autism.
So you need to know where your daughter is regarding the autism side so you can plan her schooling.
So I would recommend getting a second opinion from a good paediatrician/child psychologist who has experience in autism.
Once you have that I would find out what your legal rights are regarding schooling, then you will know what they should provide by law.
how old is your daughter? Usually people go to a developmental pediatrician or a pediatric neurologist to get an accurate diagnosis of PDD or autism. Not sure what your health care provides, if it will cover a specialist. You also want to go to a top doctor. Many people travel, if they are able, if there is a doctor who is better than many others. There are lots of top doctors in different regions (in the US at least). With a diagnosis of CP, it sounds like you are already seeing doctors for that. Maybe they can recommend someone who is a specialist in autism/PDD/austism spectrum. What therapy you get for your daughter also depends on her developmental delays. From what I've read, heard, and so forth, about autism, is that every person who has it usually has it differently.
Hang in there. Getting a diagnosis is confusing sometimes. having a good doctor who can explain things to you is also good. Our daughter got a diagnosis of PDD (unspecified whether PDD-NOS or autism at this point because she's only 2 1/2), and her developmental pediatrician is really good. We had a 4 to 5 month wait to see him. It was worth it. We've seen him a few times now over the last several months. He only diagnosed her on the last visit. He also explained that we have this wonderful daughter and we shouldn't feel discouraged because she's delayed in certain areas (like she's a late talker among other things which is frustratign more for her than for us). So, having a doctor tell us the good side of things, it is nice to have a doctor sit down and talk to us about what our daughter's strengths are as well as her weaknesses and how to develop her strengths.
Hang in there. Feel free to PM me if you want. Not sure how much help I can be (depends on the age of your daughter ... if she's under 3 or close around that age, I could tell you what we are doing with our daughter and the services we are getting... but you probably are already getting services with the CP).
Hang in there. Getting a diagnosis is confusing sometimes. having a good doctor who can explain things to you is also good. Our daughter got a diagnosis of PDD (unspecified whether PDD-NOS or autism at this point because she's only 2 1/2), and her developmental pediatrician is really good. We had a 4 to 5 month wait to see him. It was worth it. We've seen him a few times now over the last several months. He only diagnosed her on the last visit. He also explained that we have this wonderful daughter and we shouldn't feel discouraged because she's delayed in certain areas (like she's a late talker among other things which is frustratign more for her than for us). So, having a doctor tell us the good side of things, it is nice to have a doctor sit down and talk to us about what our daughter's strengths are as well as her weaknesses and how to develop her strengths.
Hang in there. Feel free to PM me if you want. Not sure how much help I can be (depends on the age of your daughter ... if she's under 3 or close around that age, I could tell you what we are doing with our daughter and the services we are getting... but you probably are already getting services with the CP).
Sorry I'm not much helpabout the CP. I do know PDD NOS because that I've lived with.
With PDD NOS development is delayed, but that doesn't mean nothing will come at all. It just means it'll come in its own pace at its own time. Your child may not reach certain mile stones at the "scheduled" time, but like someone being late to a meeting, they will come with persistance, patience and lots of love. (maybe the "lots of love" wouldn't apply to someone beling late to a meeting, but it would apply to your child.)
With PDD NOS development is delayed, but that doesn't mean nothing will come at all. It just means it'll come in its own pace at its own time. Your child may not reach certain mile stones at the "scheduled" time, but like someone being late to a meeting, they will come with persistance, patience and lots of love. (maybe the "lots of love" wouldn't apply to someone beling late to a meeting, but it would apply to your child.)
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