Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 your son sounds like my boy, without meeting him they will say or suggest PDD but when they meet him and he is not in a testing situation they will no way. my son is in K right now and we did not diagnose for PDD and did not recieve services he needed in preschool. I feel that you should have to get a PDD/autism label in order to get teachers to come to home. we had special ed preschool and 4 hours weekly of SEIT teacher shadowing him in a typical school. now being in a typical school it helped him a lot but I would have liked him to have home teacher to help with cognitive issues. he gets it now in K. I had said in a meeting when he first started that his scores should grant hm extra help not his label and they agreed. I am sped teacher for autistic/PDD indiv. and they acually scored average to above average in cognition whereas my son scored in low in everything and in preschool they felt he didn't need extra help. so dumb. I understand your stress and the advice I could give you and is to remind them that his scores are what the services not the label. let me understand, the school is testing to take away services or is this testing an annual review? they do get tested every year and especially before Kindergarten. its very frustrating to know how bright your child is all you can do is advocte for him and remind them that this is child not thing that had a disorder. I would focus on his frustrations of not being able to talk and how hard it is on him and so on. this made him human being not some kid in their district. please write me back about my question and hope I helped with my story chris Grassia <miche@...> wrote: I wrote a while back about my concerns about a psychiatrist's ability to diagnose or un-diagnose my son. First I have never agreed with autism and I really don't think he is autistic, but I have reservations about him being tested now. I have him scheduled in a year (when he'll be 5.4 yrs) at a place qualified to negate the diagnosis. The schools want to wait because if they can negate it now they will provide him less services. The school psychologist called today to schedule an eval. She's not even an MD, she has a masters in educational psychology. She claims she has worked with many autistic kids. She claims she understands verbal dyspraxia (despite it being rare in our area.) She also thought that *I* was the one who requested this testing!!! I explained my reservations. First is a single person qualified to give an accurate diagnosis on a minimally verbal child? His SLPs say no so it's not just my concern. I asked what the eval would entail. Sure enough parent completed surveys as well as cognitive testing. She would test him both with verbal and non-verbal tests. She didn't specify which one. We do NOT suspect any cognitive delays. Even his new SLP (through the schools) thinks that when his expressive lang improves he will actually most likely test gifted in some areas and she would not be surprised if he had a high IQ. Tested formally I know he will NOT show this. He was already labelled as cognitively delayed at age 2.5 when he was diagnosed with autism. It took a second day of observations in a non-testing environment and the psychologist completely reversed her report. She changed it to unable to determine due to the speech and lang delays, but off the record said the same as his new SLP - she said he was very bright! So my questions are many. The first that comes to mind is what does cognitive testing have to do with an autism diagnosis. IQ is not what you base a diagnosis on. If I am forced to agree to this testing (which I would do anything to avoid as he's going through a low emotional period right now where he is easily frustrated and quick to just " shut down " ) what are the best non-verbal IQ tests for an apraxic child. We have a double whammy as he has both expressive and receptive delays. He has about 200 words, most infrequently used (a good 1/4 to 1/3 being animals.) He also had significant receptive delays which are most likely due to language storage and recall issues and possibly auditory processing or discrimination concerns. Formally he tests at 17mo-2.5yr in expressive and about 6 months higher in receptive, but in day to day function with non-auditory cues and proper supports he functions at a higher level than that. He has some aspects of language that are spot on developmentally such as correcting others and criticizing! His speech clarity is poor. He's barely stringing more than two words together. Sometimes he does 4-5, but only at home and only family can /sometimes/ understand what he says when he does. He doesn't understand commands such as " show me " or " point to. " He will do these things if given about 5 practice runs where you physically move him through the motions to let him know what is expected. He is classically apraxic in that he absolutely cannot access a motor plan when on the spot and he's VERY aware when he is being tested and just shuts down. Given this can a non-verbal test even be accurate? I have SERIOUS reservations about allowing anyone to touch on his supposed cognitive levels and again slap a label on him that isn't accurate. It also ticks me off that the schools aren't doing this for HIS best interests. They are clearly requesting an eval so they can take away services and set precedence on placement for next year. Any advice? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 > let me understand, the school is testing to take away services or is > this testing an annual review? they do get tested every year and > especially before Kindergarten. Thanks for the reply He has a diagnosis of moderate autism at age 2.5. No one believes it is still accurate (except the autism specialist who worked with him last summer, but she doesn't understand apraxia and he was not yet diagnosed - she helps another child at his school so she still sees him.) They requested a test to diagnose or refute the autism diagnosis. I asked that we wait until next winter when we can get it at the reputable clinic. They want it now. If he is not autistic (which he probably is not - if he is it is very mild) they are going to argue they don't need to make up the 60+ hours of services from his Sept IEP and that his appropriate placement is at the special ed school, not the private preschool. It is obvious that the sped school is not his LRE, but it was the autism label that got us the other placement (based on best practices and state guidelines that no more than 2 children with autism be in the same classroom.) If he doesn't have autism they will take away his placement (which they haven't paid for anyway.) If he is parent placed in private school they are not obligated to give him ANY services. He will (on paper) lose the 3 hours of autism support which I don't mind as he'll never get those anyway. But he will also lose the two hours of speech he finally started getting a few weeks ago. They have been on his IEP since last May and amended to be one-on-one instead of group in Sept. They agreed to pay my out of pocket costs for private speech since last fall and they agreed to make up compensatory time, BUT again if the autism label goes away they will refuse all that. I don't want to keep the label because I don't feel it is fully accurate, but I also don't want it taken away by a single diagnositician. I want a team, a qualified team like who we are set to see in a year. I also don't want cognitive testing to slap another issue on him that is not there. No one suspects his IQ is low, but IQ test him and it will appear that way because he doesn't test well. The biggest things I'm asking is if I'm forced to IQ test him (he's next mandatory test is not until just before entering K which is fall '07) which tests should I request they do. What is the best non-verbal test for a 4 yr old with language around age 2 and possible auditory processing issues (with receptive being only about 6 mo higher than expressive.) Miche Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 I don't think a school psychologist is qualified to diagnose a child, particularly a child who is not very verbal, with autism. If I were you, I would take him to a pediatric neuropsychologist - their testing is very thorough. IMO school districts have a financial interest in under-diagnosing. In my state, we are only required to agree to testing every 3 years, so check the laws in your state. Or tell them that if he is evaluated, you want an outside expert (a neuropsych of your choosing) to do the testing at their expense. Cognitive testing is not used to diagnose autism. It sounds to me like they are testing to see if he qualifies for a MR dx. good luck, > > I wrote a while back about my concerns about a psychiatrist's ability to > diagnose or un-diagnose my son. First I have never agreed with autism and > I really don't think he is autistic, but I have reservations about him > being tested now. I have him scheduled in a year (when he'll be 5.4 yrs) > at a place qualified to negate the diagnosis. The schools want to wait > because if they can negate it now they will provide him less services. The > school psychologist called today to schedule an eval. She's not even an > MD, she has a masters in educational psychology. She claims she has worked > with many autistic kids. She claims she understands verbal dyspraxia > (despite it being rare in our area.) She also thought that *I* was the one > who requested this testing!!! I explained my reservations. First is a > single person qualified to give an accurate diagnosis on a minimally verbal > child? His SLPs say no so it's not just my concern. I asked what the eval > would entail. Sure enough parent completed surveys as well as cognitive > testing. She would test him both with verbal and non-verbal tests. She > didn't specify which one. We do NOT suspect any cognitive delays. Even > his new SLP (through the schools) thinks that when his expressive lang > improves he will actually most likely test gifted in some areas and she > would not be surprised if he had a high IQ. Tested formally I know he will > NOT show this. He was already labelled as cognitively delayed at age 2.5 > when he was diagnosed with autism. It took a second day of observations in > a non-testing environment and the psychologist completely reversed her > report. She changed it to unable to determine due to the speech and lang > delays, but off the record said the same as his new SLP - she said he was > very bright! > > So my questions are many. The first that comes to mind is what does > cognitive testing have to do with an autism diagnosis. IQ is not what you > base a diagnosis on. > > If I am forced to agree to this testing (which I would do anything to avoid > as he's going through a low emotional period right now where he is easily > frustrated and quick to just " shut down " ) what are the best non-verbal IQ > tests for an apraxic child. We have a double whammy as he has both > expressive and receptive delays. He has about 200 words, most infrequently > used (a good 1/4 to 1/3 being animals.) He also had significant receptive > delays which are most likely due to language storage and recall issues and > possibly auditory processing or discrimination concerns. Formally he tests > at 17mo-2.5yr in expressive and about 6 months higher in receptive, but in > day to day function with non-auditory cues and proper supports he functions > at a higher level than that. He has some aspects of language that are spot > on developmentally such as correcting others and criticizing! His speech > clarity is poor. He's barely stringing more than two words > together. Sometimes he does 4-5, but only at home and only family can > /sometimes/ understand what he says when he does. He doesn't understand > commands such as " show me " or " point to. " He will do these things if given > about 5 practice runs where you physically move him through the motions to > let him know what is expected. He is classically apraxic in that he > absolutely cannot access a motor plan when on the spot and he's VERY aware > when he is being tested and just shuts down. > > Given this can a non-verbal test even be accurate? I have SERIOUS > reservations about allowing anyone to touch on his supposed cognitive > levels and again slap a label on him that isn't accurate. It also ticks me > off that the schools aren't doing this for HIS best interests. They are > clearly requesting an eval so they can take away services and set > precedence on placement for next year. > > Any advice? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 , I am not sure if your son has autism or not but, I did not have my son dxed until I needed services. He is moderately autistic he also has downsyndrome.We saw 3 Developemental Peds.Never told any of them about each others findings and within an hour of examnations and testing all of them dxed him asd. What you are calling shut down for your child is what we call non-compliance in the asd world.In my opioion if it takes the dx to get the services that is in his best interest.If you go to some autism websites many of them show you the criteria for dxing autism and on what level.Thats how I knew before we ever went to a doctor about Autism.He just did not fit in the downsyndrome world.He fits perfectly in both though. Hope this helps some. Laurie mom to Mic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 something just doesnt sound right here all professionals I know who know about autism also know about apraxia almost all asd kids are apraxic.Someone is trying to cut your services, go over their heads.Find the expert in your area and get an eval the school cant touch that.You will get the services he needs. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 He has an apraxia diagnosis from Prompt. They aren't touching that, but that only qualifies him for two hours of speech in the special ed school (which is awful.) Even with an expert giving this diagnosis it took the public schools six months to comply with his IEP and actually start providing services. The ONLY expert who can diagnose autism in a young child is SWAN (southwest autism network.) I have an eval scheduled in a year. The waiting list is a min of 4-6 months. They could get him in earlier, but they agree with me that it's in his best interest to wait. The public schools don't want to wait even until summer. That is the problem. I highly doubt that anyone will find him autistic, but I also don't want them to slap a MR label on him. No one believes he has any kind of cognitive delays. He clearly has language delays, including receptive, and even with a non-verbal test he needs to understand the directions he is being given. He wants to understand, he is attentive up to a point, but unless they are flexible with methods of explaining to him he doesn't always understand. Miche At 12:58 PM 2/22/2006, you wrote: > something just doesnt sound right here all professionals I know >who know about autism also know about apraxia almost all asd kids are >apraxic.Someone is trying to cut your services, go over their heads.Find >the expert in your area and get an eval the school cant touch that.You >will get the services he needs. Laurie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 >Only a >developmental pediatrician, neurologist or psychiatrist can make this >diagnosis via dsm guidelines. Is this written somewhere in the dsm? I ask because I thought I had seen that it has to be a medical doctor who diagnoses, but I can't find it now. This is why a pediatrician is on the early childhood multidisciplinary team diagnostic groups. Originally the schools said they would have a psychiatrist and I wasn't thrilled about a single person making this determination, but a psychologist seems completely inappropriate! >If you are concerned about the methods being used to >dx please bring your child to a reputable child psychiatrist, neurologist or >developmental pediatrician. He's been twice to a reputable pediatric neurologist who failed to confirm the initial autism diagnosis. He does not present as obviously autistic, in fact she highly doubted that was accurate. Mainly she did not feel the label was necessary at that time when considering the impact the testing would have on the child. What was important is that he continued with speech therapy no matter what we called it. That was good enough for Early Intervention. Thanks everyone for your feedback. At this point I'm waiting for another call from the schools. I spoke directly with the psychologist last time when she called to schedule him. I addressed my concerns to her. She is going to again speak to the sped dir. What I need to emphasize in the next discussion is that they are looking to overturn a medical diagnosis without providing a medical diagnostician to do it. Also that I do not agree to cognitive testing as it has nothing to do with an autism diagnosis. Miche Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 CAN YOU HAVE HIM TESTED PRIVATELY TO GET A SECOND OPINION? your child may test differently as he gets older and especially as the communication improves, josh gets stuck with certain behaviors but he sure has changed alot in 3 years and i am now being told that we may not need services for speech and ot after next year which means alot to us because i hate to pull him out of school to get private therapy. can you believe that? no therapy after next year, thats what we are hopeing for and we are hopeing to go to disney world next year. charlotte henry Quote Link to comment Share on other sites More sharing options...
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