Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 You got me on this one. My daughter has DS, she is five and her behavior is totally Autistic. The Autism Clinic dx her with Autism as well as a Psychologist/Neuropsychologist. What can a Neurologist do as far as diagnosing? Im just curious and wondering if I should take my daughter to one. I sometimes doubt that the two can exist but I cant ignore how my daughter is either. I probably sound stupid here, i just have a hard time expressing what Im feeling. She is non-verbal, loves to spin things, shakes her head back and forth, rarely comes up to me, rocks back and forth. I know she is low functioning but is that all or is it Autism. not getting a dx So why is it so many " professionals " do not want to recognize or admit there may be more than just DS? It seems to me that that attitude is not very professional! At our IEP, they just keep saying how Angie is just very low functioning and not testable and it seems lots of parents hear this. Isn't autism more than just social " delays " ? I thought autism included behaviors like spinning, flicking, dropping etc. And most parents with a DS child report this these autistic type of behaviors, so why are these DS kids not getting a dual dx? I am confused I guess. I know it is more than just a label, but, in some cases, you need that label, if you know what I mean. We're going to see a neuro in a couple weeks. What kind of data can I bring to him on the dual dx? I hear he specializes in DS, so, perhands he'd be aware of the dual dx? ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.15.6/567 - Release Date: 12/4/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 : Many doctors don't want step " out of the box " if you know what I mean. Many feel, well this poor family has DS to deal with-that is plenty. Why not just tell them it is the DS causing the other issues. Many families feel the same way, unfortunately. However, many of us recognize the difference between our child and the others with DS. You can have your Dr. chat with Dr. Capone at Kennedy Krieger, or Dr. Bonnie Paterson at Children's Hosp in Cincinnati. They both are doing the research on the DDx...and yes, it does exist. I would suggest bringing a copy of Joan's brochure, as well as some info from 's sites, and possibly Dr. Paterson's logs. Here are some links for you to look over..k http://www.bellaonline.com/articles/art33178.asp http://www.disabilitysolutions.org/news.htm http://www.intellectualdisability.info/complex_disability/autism_downs.htm Hope this helps! Liz not getting a dx So why is it so many " professionals " do not want to recognize or admit there may be more than just DS? It seems to me that that attitude is not very professional! At our IEP, they just keep saying how Angie is just very low functioning and not testable and it seems lots of parents hear this. Isn't autism more than just social " delays " ? I thought autism included behaviors like spinning, flicking, dropping etc. And most parents with a DS child report this these autistic type of behaviors, so why are these DS kids not getting a dual dx? I am confused I guess. I know it is more than just a label, but, in some cases, you need that label, if you know what I mean. We're going to see a neuro in a couple weeks. What kind of data can I bring to him on the dual dx? I hear he specializes in DS, so, perhands he'd be aware of the dual dx? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 “She is non-verbal, loves to spin things, shakes her head back and forth, rarely comes up to me, rocks back and forth. I know she is low functioning but is that all or is it Autism.†You just described ! We were just at Dollar Tree and I was buying the kids some Wiggles books. , my 18 month old, was looking thru it, turning the pages, I had to hold ’s and she just taps the side of the book. Or she’ll shake it in front of her face and like right now, she’s tapping two toys together. Thank you Liz for those links! I will take them to show the doc and maybe even have him call up the other doctors, that might be really good to do > > : Many doctors don't want step " out of the box " if you know what I mean. Many feel, well this poor family has DS to deal with-that is plenty. Why not just tell them it is the DS causing the other issues. Many families feel the same way, unfortunately. However, many of us recognize the difference between our child and the others with DS. You can have your Dr. chat with Dr. Capone at Kennedy Krieger, or Dr. Bonnie Paterson at Children's Hosp in Cincinnati. They both are doing the research on the DDx...and yes, it does exist. I would suggest bringing a copy of Joan's brochure, as well as some info from 's sites, and possibly Dr. Paterson's logs. Here are some links for you to look over..k > > http://www.bellaonline.com/articles/art33178.asp > > http://www.disabilitysolutions.org/news.htm > > http://www.intellectualdisability.info/complex_disability/autism_downs.htm > > Hope this helps! > > Liz > not getting a dx > > > So why is it so many " professionals " do not want to recognize or admit > there may be more than just DS? It seems to me that that attitude is > not very professional! At our IEP, they just keep saying how Angie is > just very low functioning and not testable and it seems lots of > parents hear this. Isn't autism more than just social " delays " ? I > thought autism included behaviors like spinning, flicking, dropping > etc. And most parents with a DS child report this these autistic type > of behaviors, so why are these DS kids not getting a dual dx? I am > confused I guess. I know it is more than just a label, but, in some > cases, you need that label, if you know what I mean. We're going to > see a neuro in a couple weeks. What kind of data can I bring to him on > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > of the dual dx? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 : You may have to be the Drs. teacher. Show them, and they will learn. Liz not getting a dx > > > So why is it so many " professionals " do not want to recognize or admit > there may be more than just DS? It seems to me that that attitude is > not very professional! At our IEP, they just keep saying how Angie is > just very low functioning and not testable and it seems lots of > parents hear this. Isn't autism more than just social " delays " ? I > thought autism included behaviors like spinning, flicking, dropping > etc. And most parents with a DS child report this these autistic type > of behaviors, so why are these DS kids not getting a dual dx? I am > confused I guess. I know it is more than just a label, but, in some > cases, you need that label, if you know what I mean. We're going to > see a neuro in a couple weeks. What kind of data can I bring to him on > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > of the dual dx? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 As far as Autistic behaviors, Landon has most of the classic signs. He rips paper just to hear the sound it makes. Pounds the sides of his head with his hands, pinches his own arm, he's non verbal, stomps his feet, rocks back and forth, he doesn't travel well in public, he smears his feces if he gets the chance, shakes things....etc. I never knew what the signs were until a year and a half ago, I just figured he was more severe DS than most. If I'd known, or suspected that there could even BE a dual dx, i'd have pursued it much sooner. Leave it to small town Docs to figure out what a city Doc couldn't in 13 1/2 years.... > > > > : Many doctors don't want step " out of the box " if you know > what I mean. Many feel, well this poor family has DS to deal > with-that is plenty. Why not just tell them it is the DS causing the > other issues. Many families feel the same way, unfortunately. > However, many of us recognize the difference between our child and the > others with DS. You can have your Dr. chat with Dr. Capone at > Kennedy Krieger, or Dr. Bonnie Paterson at Children's Hosp in > Cincinnati. They both are doing the research on the DDx...and yes, it > does exist. I would suggest bringing a copy of Joan's brochure, as > well as some info from 's sites, and possibly Dr. Paterson's > logs. Here are some links for you to look over..k > > > > http://www.bellaonline.com/articles/art33178.asp > > > > http://www.disabilitysolutions.org/news.htm > > > > > http://www.intellectualdisability.info/complex_disability/autism_downs.htm > > > > Hope this helps! > > > > Liz > > not getting a dx > > > > > > So why is it so many " professionals " do not want to recognize or admit > > there may be more than just DS? It seems to me that that attitude is > > not very professional! At our IEP, they just keep saying how Angie is > > just very low functioning and not testable and it seems lots of > > parents hear this. Isn't autism more than just social " delays " ? I > > thought autism included behaviors like spinning, flicking, dropping > > etc. And most parents with a DS child report this these autistic type > > of behaviors, so why are these DS kids not getting a dual dx? I am > > confused I guess. I know it is more than just a label, but, in some > > cases, you need that label, if you know what I mean. We're going to > > see a neuro in a couple weeks. What kind of data can I bring to him on > > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > > of the dual dx? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Since I am new to the group I was wondering if I could get an idea on just how old your children are. After reading all the trouble most of you have had or having about a dual dx, I feel blessed that my ped doc is so in tune with also and referred her to Children’s Hospital Developmental Clinic and they did a dual dx at 3 ½ yrs old. My other question is this. Only on RARE occasions does get upset and that she way lay on the floor and cry (just cry not throwing fit) until I come pick her up and then it takes a few for me to calm her down. And I mean RARE occasions. Most of the time she just checks out as I call it and sits by herself in a corner and suckles her tongue and self stims with a dangling toy. I read a lot of behavioral issues that you all discuss. Will this happen with as she gets older? So new to this so I am just trying to figure it out. Thanks :-) _____ From: [mailto: ] On Behalf Of Laci Richter Sent: Monday, December 04, 2006 6:17 PM To: Subject: [sPAM] Re: not getting a dx As far as Autistic behaviors, Landon has most of the classic signs. He rips paper just to hear the sound it makes. Pounds the sides of his head with his hands, pinches his own arm, he's non verbal, stomps his feet, rocks back and forth, he doesn't travel well in public, he smears his feces if he gets the chance, shakes things....etc. I never knew what the signs were until a year and a half ago, I just figured he was more severe DS than most. If I'd known, or suspected that there could even BE a dual dx, i'd have pursued it much sooner. Leave it to small town Docs to figure out what a city Doc couldn't in 13 1/2 years.... > > > > : Many doctors don't want step " out of the box " if you know > what I mean. Many feel, well this poor family has DS to deal > with-that is plenty. Why not just tell them it is the DS causing the > other issues. Many families feel the same way, unfortunately. > However, many of us recognize the difference between our child and the > others with DS. You can have your Dr. chat with Dr. Capone at > Kennedy Krieger, or Dr. Bonnie Paterson at Children's Hosp in > Cincinnati. They both are doing the research on the DDx...and yes, it > does exist. I would suggest bringing a copy of Joan's brochure, as > well as some info from 's sites, and possibly Dr. Paterson's > logs. Here are some links for you to look over..k > > > > http://www.bellaonl <http://www.bellaonline.com/articles/art33178.asp> ine.com/articles/art33178.asp > > > > http://www.disabili <http://www.disabilitysolutions.org/news.htm> tysolutions.org/news.htm > > > > > http://www.intellec <http://www.intellectualdisability.info/complex_disability/autism_downs.htm> tualdisability.info/complex_disability/autism_downs.htm > > > > Hope this helps! > > > > Liz > > not getting a dx > > > > > > So why is it so many " professionals " do not want to recognize or admit > > there may be more than just DS? It seems to me that that attitude is > > not very professional! At our IEP, they just keep saying how Angie is > > just very low functioning and not testable and it seems lots of > > parents hear this. Isn't autism more than just social " delays " ? I > > thought autism included behaviors like spinning, flicking, dropping > > etc. And most parents with a DS child report this these autistic type > > of behaviors, so why are these DS kids not getting a dual dx? I am > > confused I guess. I know it is more than just a label, but, in some > > cases, you need that label, if you know what I mean. We're going to > > see a neuro in a couple weeks. What kind of data can I bring to him on > > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > > of the dual dx? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 I am new to the group too. My son is 14 & wasn't diagnosed until he was 9 1/2. He did not have many of the classic symptoms of arm flapping, head-banging, and so forth. The main thing to remember is that they are all unique. My son doesn't have a lot of behavioral issues, he just doesn't know how to relate to others or play very well. He is also not on any medicines. He does have issues with eating foods with texture and will not bite and/or chew his food. He is also very developmentally delayed and is in the MO state school. How old is your daughter now? not getting a dx > > > > > > So why is it so many " professionals " do not want to recognize or admit > > there may be more than just DS? It seems to me that that attitude is > > not very professional! At our IEP, they just keep saying how Angie is > > just very low functioning and not testable and it seems lots of > > parents hear this. Isn't autism more than just social " delays " ? I > > thought autism included behaviors like spinning, flicking, dropping > > etc. And most parents with a DS child report this these autistic type > > of behaviors, so why are these DS kids not getting a dual dx? I am > > confused I guess. I know it is more than just a label, but, in some > > cases, you need that label, if you know what I mean. We're going to > > see a neuro in a couple weeks. What kind of data can I bring to him on > > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > > of the dual dx? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 : Tori was diagnosed just before her 4th birthday...but I knew prior to the dx. She will be 7 in Feb. Liz not getting a dx > > > > > > So why is it so many " professionals " do not want to recognize or admit > > there may be more than just DS? It seems to me that that attitude is > > not very professional! At our IEP, they just keep saying how Angie is > > just very low functioning and not testable and it seems lots of > > parents hear this. Isn't autism more than just social " delays " ? I > > thought autism included behaviors like spinning, flicking, dropping > > etc. And most parents with a DS child report this these autistic type > > of behaviors, so why are these DS kids not getting a dual dx? I am > > confused I guess. I know it is more than just a label, but, in some > > cases, you need that label, if you know what I mean. We're going to > > see a neuro in a couple weeks. What kind of data can I bring to him on > > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > > of the dual dx? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 , My dual dx, Janie, is 7 and was just diagnosed a few months ago. From this group I have learned that there are a wide variety of behaviors our kids have, just as kids with other conditions have. It seems that there may be one specific behavior that a dozen kids share, but their other behaviors may be totally different. I have not yet seen one specific behavior that they ALL have. When Janie was an infant she banged her head and rocked a lot, but not now. She does currently pinch herself and sock herself in the face. Mostly she strikes out at others, especially babies. She will smear poop, but it's more like she is trying to clean herself up. All you can do is count your blessings for the good things your children do and be thankful for every less desirable thing that they do not do. Janie seems to go through behavior cycles. Take one day (sometimes one minute) at a time and don't expect worse to come. It may, but why worry if it isn't there? If and when it comes, then deal with it! Hopefully you are one of the lucky ones with less severe behaviors. LOL, P. > > > > > > : Many doctors don't want step " out of the box " if you know > > what I mean. Many feel, well this poor family has DS to deal > > with-that is plenty. Why not just tell them it is the DS causing the > > other issues. Many families feel the same way, unfortunately. > > However, many of us recognize the difference between our child and the > > others with DS. You can have your Dr. chat with Dr. Capone at > > Kennedy Krieger, or Dr. Bonnie Paterson at Children's Hosp in > > Cincinnati. They both are doing the research on the DDx...and yes, it > > does exist. I would suggest bringing a copy of Joan's brochure, as > > well as some info from 's sites, and possibly Dr. Paterson's > > logs. Here are some links for you to look over..k > > > > > > http://www.bellaonl <http://www.bellaonline.com/articles/art33178.asp> > ine.com/articles/art33178.asp > > > > > > http://www.disabili <http://www.disabilitysolutions.org/news.htm> > tysolutions.org/news.htm > > > > > > > > > http://www.intellec > <http://www.intellectualdisability.info/complex_disability/autism_down s.htm> > tualdisability.info/complex_disability/autism_downs.htm > > > > > > Hope this helps! > > > > > > Liz > > > not getting a dx > > > > > > > > > So why is it so many " professionals " do not want to recognize or > admit > > > there may be more than just DS? It seems to me that that attitude is > > > not very professional! At our IEP, they just keep saying how > Angie is > > > just very low functioning and not testable and it seems lots of > > > parents hear this. Isn't autism more than just social " delays " ? I > > > thought autism included behaviors like spinning, flicking, dropping > > > etc. And most parents with a DS child report this these autistic > type > > > of behaviors, so why are these DS kids not getting a dual dx? I am > > > confused I guess. I know it is more than just a label, but, in some > > > cases, you need that label, if you know what I mean. We're going to > > > see a neuro in a couple weeks. What kind of data can I bring to > him on > > > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > > > of the dual dx? > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 Hi to all the new members, I am Karyn, mom to 4 kids- almost 18, ds, autism and a whole host of other things, , 6, r, 2 and , 7 weeks. A bit of history on diagnosing autism, when I start working with kids with disabilities in the 1980's the way that autism was diagnosed was that all other disabilities were ruled out first,ex. if a child had tuberous schlerosis, Fragile X, or down syndrome,then they " couldn't " be diagnosed with autism because they already had another diagnosis. I managed a group home where we cared for 6 children. I didn't work with a child diagnosed with autism for about the first 5 years. Looking back the majority of the kids I cared for during that time would probably be diagnosed as having autism along with their other disabilities. I didn't realize that not all kids with significant cognitive delays didn't have autistic " tendencies " until I heard Temple Grandin speak. So, I guess I am saying that these drs may be working on outdated information. If you are trained that everyone with a cognitive disability does this then why would they think to diagnose it. Liz- As far as behaviors, enjoy your daughter the way she is. I know three kids with ds and autism. They are all very different. My son is quite capable, very verbal but so behaviorally challenged that he is very limited. A friend of his from elem. school also dual diagnosed is not verbal, doesn't interact much but his parents and siblings can go just about anywhere with him without much trouble. The third young man is also non-verbal but hurts himself and others, hates babies, very difficult to take places. Everyone is different. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 is your son on a puree diet? not getting a dx > > > > > > So why is it so many " professionals " do not want to recognize or admit > > there may be more than just DS? It seems to me that that attitude is > > not very professional! At our IEP, they just keep saying how Angie is > > just very low functioning and not testable and it seems lots of > > parents hear this. Isn't autism more than just social " delays " ? I > > thought autism included behaviors like spinning, flicking, dropping > > etc. And most parents with a DS child report this these autistic type > > of behaviors, so why are these DS kids not getting a dual dx? I am > > confused I guess. I know it is more than just a label, but, in some > > cases, you need that label, if you know what I mean. We're going to > > see a neuro in a couple weeks. What kind of data can I bring to him on > > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > > of the dual dx? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 No, but he only eats soft stuff like pasta, some meat, or cooked veggies, cut up small. He has done better with his textures over the past few years, but I don't think he is really chewing. I can't get him to bite off pieces of anything, from bread to meat sticks (baby food). christine wrote: is your son on a puree diet? not getting a dx > > > > > > So why is it so many " professionals " do not want to recognize or admit > > there may be more than just DS? It seems to me that that attitude is > > not very professional! At our IEP, they just keep saying how Angie is > > just very low functioning and not testable and it seems lots of > > parents hear this. Isn't autism more than just social " delays " ? I > > thought autism included behaviors like spinning, flicking, dropping > > etc. And most parents with a DS child report this these autistic type > > of behaviors, so why are these DS kids not getting a dual dx? I am > > confused I guess. I know it is more than just a label, but, in some > > cases, you need that label, if you know what I mean. We're going to > > see a neuro in a couple weeks. What kind of data can I bring to him on > > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > > of the dual dx? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 >Hi , I guess it's the " professionals " background and how open minded they are.....our Developmental Ped downtown at CHOP (Philly) had a background in Autism though she was the specialist for Trisomy 21. At the time I didn't like what was coming out of her mouth (that our son had Autistic Features) but now am so grateful for her and her knowledge. At the same time we had " professionals " INSIST that all T21 kids were stimmers, and rockers and didn't " talk " ......so much for ignoring the red flags. They did a 180 after we rec'd the DX. Have you looked over the book Demystifying Autism Spectrum Distorders by Carolyn Thorwarth Bruey, Psy. D., it's got a FANTASTIC page of Red Flags for Autism. It has become our " Bible " of sorts. It does a great job explaining ASD plus how it differs from other behaviors a person might have. It was a good book for us to not only use but share with some of our son's educators. There is a whole page of RED FLAGS. It's really quite good. The My pediatrician REFUSED to believe it was even possible to have both diagnosis's. After Dr Pipan's report he has completely changed his mind about not only dual diagnosis but autism in general (anyone can have it).If you don't feel like this Developmental PED is hearing your concerns you might want to request the autism test they give the parents. Maybe the doc needs to see the results to get it. Best to you! Cat > So why is it so many " professionals " do not want to recognize or admit > there may be more than just DS? It seems to me that that attitude is > not very professional! At our IEP, they just keep saying how Angie is > just very low functioning and not testable and it seems lots of > parents hear this. Isn't autism more than just social " delays " ? I > thought autism included behaviors like spinning, flicking, dropping > etc. And most parents with a DS child report this these autistic type > of behaviors, so why are these DS kids not getting a dual dx? I am > confused I guess. I know it is more than just a label, but, in some > cases, you need that label, if you know what I mean. We're going to > see a neuro in a couple weeks. What kind of data can I bring to him on > the dual dx? I hear he specializes in DS, so, perhands he'd be aware > of the dual dx? > > Quote Link to comment Share on other sites More sharing options...
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